Original Research

On a single night in 2012, 62,619 veterans experienced homelessness.¹ With high rates of illness, as well as alcohol, tobacco, and other drug (ATOD) use among homeless adults, ending veteran homelessness is a signature initiative of the VA.^2-4 However, despite increasing efforts to improve health care for homeless individuals, little is known about best practices in homeless-focused primary care.^2,5

With an age-adjusted mortality that is 2 to 10 times higher than that of their housed counterparts, homeless veterans pose a formidable challenge for primary care providers (PCPs).^6,7 The complexity of homeless persons’ primary care needs is compounded by poor social support and the need to navigate priorities (eg, shelter) that compete with medical care.^6,8,9 Moreover, veterans may face unique vulnerabilities conferred by military-specific experiences.^2,10

As of 2012, only 2 VA facilities had primary care clinics tailored to the needs of homeless veterans. McGuire and colleagues built a system of colocated primary care, mental health, and homeless services for mentally ill veterans in Los Angeles, California.¹¹ Over 18 months, this clinic facilitated greater primary and preventive care delivery, though the population’s physical health status did not improve.¹¹ More recently, O’Toole and colleagues implemented a homeless-focused primary care clinic in Providence, Rhode Island.⁶ Compared with a historical sample of homeless veterans in traditional VA primary care, veterans in this homeless-tailored clinic had greater improvements in some chronic disease outcomes.⁶ This clinic also decreased nonacute emergency department (ED) use and hospitalizations for general medical conditions.⁶

Despite these promising outcomes, the VA lacked a nationwide homeless-focused primary care initiative. In 2012 the VA Office of Homeless Programs and the Office of Primary Care Operations funded a national demonstration project to create Homeless Patient-Aligned Care Teams (HPACTs)—primary care medical clinics for homeless veterans—at 32 facilities. This demonstration project guided HPACTs to tailor clinical and social services to homeless veterans’ needs, establish processes to identify and refer appropriate veterans, and integrate distinct services.

There were no explicit instructions that detailed HPACT structure. Because new VA programs must fit local contextual factors, including infrastructure, space, personnel, and institutional/community resources, different models of homeless-focused primary care have evolved.

This article is a case study of HPACTs at 3 of the 32 participating VA facilities, each reflecting a distinct community and organizational context. In light of projected HPACT expansion and concerns that current services are better tailored to sheltered homeless veterans than to their unsheltered peers, there is particular importance to  detailed clinic descriptions that vividly portray the intricate relationships between service design and populations served.¹

METHODS

VA HPACTs established in May 2012 at 3 facilities were examined: Birmingham VAMC in Alabama (BIR), West Los Angeles VAMC in California (WLA), and VA Pittsburgh Healthcare System in Pennsylvania (PIT). Prior to this demonstration project, each facility offered a range of housing/social services and traditional primary care for veterans. These sites are a geographically diverse convenience sample that emerged from existing homeless-focused collaborations among the authors and represent geographically diverse HPACTs.

The national director of VA Homeless Programs formally determined that this comparison constitutes a VA operations activity that is not research.¹² This activity was exempt from Institutional Review Board review.

Study Design

Timed at an early stage of HPACT implementation, this project had 3 aims: (1) To identify noteworthy similarities and/or differences among the initial HPACT clinic structures; (2) To compare and contrast the patient characteristics of veterans enrolled in each of these clinics; and (3) To use these data to inform ongoing HPACT service design.

HPACT program evaluation data are not presented. Rather, a nascent system of care is illustrated that contributes to the limited literature concerning the design and implementation of homeless-focused primary care. Such organizational profiles inform novel program delivery and hold particular utility for heterogeneous populations who are difficult to engage in care.^13,14

Authors at each site independently developed lists of variables that fell within the 3 guiding principles of this demonstration project. These variables were compiled and iteratively reduced to a consolidated table that assessed each clinic, including location, operating hours, methods of patient identification and referral, and linkages to distinct services (eg, primary care, mental health, addiction, and social services).

This table also became a guide for HPACT directors to generate narrative clinic descriptions. Characteristics of VA medical homes that are embraced regardless of patients’ housing status (eg, patient-centered, team-based care) were also incorporated into these descriptions.¹⁵

Patient Characteristics

The VA electronic health record (EHR) was used to identify all patients enrolled in HPACTs at BIR, WLA, and PIT from May 1, 2012 (clinic inception), through September 30, 2012. Authors developed a standardized template for EHR review and coined the first HPACT record as the patient’s index visit. This record was used to code initial housing status, demographics, and acute medical conditions diagnosed/treated. If housing status was not recorded at the index visit, the first preceding informative record was used.

Records for 6 months preceding the index visit were used to identify the presence or absence of common medical conditions, psychiatric diagnoses, and ATOD abuse or dependence. Medical conditions were identified from a list of common outpatient diagnoses from the National Ambulatory Medical Care Survey, supplemented by common conditions among homeless men.^16-18 The EHR problem list (a list of diagnoses, by patient) was used to obtain diagnoses, supplemented by notes from inpatient admissions/discharges, as well as ED, primary care, and subspecialty consultations within 6 months preceding the index visit. Prior VA health care use was ascertained from the EHR review of the same 6-month window, reflecting ED visits, inpatient admissions, primary care visits, subspecialty visits, and individual/group therapy for ATOD or other mental health problems. Data were used to generate site-specific descriptive statistics.

RESULTS

Like all VA hospital-based clinics, a universal EHR captured all medical and social service notes, orders, medications, and administrative records. All facilities had on-site EDs, medical/mental health specialty care, and pharmacies. Social services, including benefits counseling and housing services, were available on site. Table 1 summarizes the HPACT structures at BIR, WLA, and PIT.

Birmingham

The BIR HPACT was devised as a new homeless-focused team located within a VA primary care clinic where other providers continued to see primary care patients. Staff and space were reallocated for this HPACT, which recruited patients in 4 ways: (1) the facility’s primary homeless program, Healthcare for Homeless Veterans, referred patients who previously sought VA housing but who required primary care; (2) an outreach specialist sought homeless veterans in shelters and on the streets; (3) HPACT staff marketed the clinic with presentations and flyers to other VA services and non-VA community agencies; and (4) a referral mechanism within the EHR.

A nurse practitioner was the PCP at this site, supervised by an academic internist experienced in the care of underserved populations, and the HPACT director, a physician certified in internal and addiction medicine. Patients at the BIR HPACT also received care from a social worker, registered nurse, licensed practical nurse, and psychiatrist who received all or a portion of their salaries from this demonstration project. This clinic accommodated walk-in appointments during business hours. Clinicians discussed clinical cases daily, and the full clinical and administrative team met weekly. To promote service integration, HPACT staff attended meetings of the BIR general primary care and Healthcare for Homeless Veterans programs, and vice versa.

West Los Angeles

At WLA, a previously established Homeless Screening Clinic that offered integrated social and medical services for homeless veterans with mental illness was already available during business hours and located within the site’s mental health program.¹¹ However, because ED use for homeless veterans peaked after hours, the new WLA HPACT was established within the WLA ED.

During WLA HPACT hours (3 weekday evenings/week), routine nursing triage occurred for all patients who presented to the ED. However, distinct from other times of day, veterans who were triaged with low-acuity and who were appropriate for outpatient care were given a self-administered, 4-item questionnaire to identify patients who were homeless or at risk for becoming homeless. Veterans who were identified with this screening tool were offered the choice of an ED or HPACT visit. Veterans who chose the latter were assigned to the queue for an HPACT primary care visit instead of the ED.

A physician led the clinical team, with additional services from a mental health clinical nurse specialist and clerks who worked with homeless and/or mental health patients during business hours and provided part-time HPACT coverage. When needed, additional services were provided from colocated ED nurses and social workers. Providers were chosen for their aptitude in culturally responsive communication.

Patients who chose to be seen in HPACT received a primary care visit that also addressed the reason for ED presentation. HPACT staff worked collaboratively, with interdisciplinary team huddles that preceded each clinic session and ended each patient visit. Referrals and social service needs were tracked and monitored by the PCP. Specialty care referrals were also tracked and facilitated when possible with direct communication between HPACT providers and specialty services. Meetings with daytime Homeless Screening Clinic and ED staff facilitated cross-departmental collaborations that helped veterans prepare for and retain housing.

Pittsburgh

The HPACT at PIT evolved from an existing PACT that provided primary care-based addiction services.² That team included an internist credentialed in addiction medicine and experienced in homeless health care, nurse practitioner, nurse care manager, nursing assistant, and clerks. At this site, HPACT providers had subspecialty expertise in the assessment and treatment of ATOD use, certification to prescribe buprenorphine for outpatient opioid detoxification and/or maintenance, and experience engaging homeless and other vulnerable veterans. The existing colocated clinic included 2 additional addiction medicine clinicians and a physician assistant experienced in ATOD use. The PIT HPACT was not restricted to patients with ATOD use.

At PIT, HPACT care was provided during business hours in a flexible model that allowed for walk-in visits. Providers from the existing addiction-focused PACT identified and referred homeless veterans, as well as patients deemed at-risk for becoming homeless. In addition, other homeless veterans who did not have a PCP could be referred through e-consults placed by any VA staff member. If a referred homeless veteran was already enrolled on a PCP’s panel, HPACT facilitated reengagement with the existing provider. Near the end of this data collection period, a peer support specialist also began community outreach to engage both enrolled and potential HPACT patients.

Patient Characteristics

Table 2 presents the demographic and housing characteristics of enrolled HPACT patients at BIR, WLA, and PIT from May 1, 2012, to September 30, 2012. Each site had a similar number of patients (n = 35/47/43 at BIR/WLA/PIT, respectively). Across sites, most patients were male and African American or white. The majority of patients at each site were housed in VA transitional housing/residential rehabilitation programs (33%/32%/40% at BIR/WLA/PIT, respectively). Fewer patients were unsheltered (on the streets or other places not meant for sleeping), though WLA had the most unsheltered patients (26%) compared with BIR (6%) and PIT (2%). BIR had more patients from emergency shelters (14%) than did the other 2 sites (4% at WLA and 0% at PIT). PIT had the most domiciled patients in houses/apartments (26%, compared with 6% each at BIR and WLA), but who were at risk for homelessness.

Table 3 summarizes the diagnoses and VA health care use patterns of these cohorts. In the first week of HPACT care, WLA addressed the most acute medical conditions (81% of patients had≥ 1 common condition), followed by BIR (54%) and PIT (23%). Among chronic conditions, chronic pain was diagnosed in 51% of patients at BIR, 30% of patients at WLA, and 12% of patients at PIT. Hepatitis C diagnoses were most common at WLA (36%), similar at PIT (33%), and lower at BIR (17%). Overall, chronic medical diagnoses were most common among patients at BIR (91%), followed by WLA (85%), and PIT (60%).

Among mental health diagnoses, mood disorders were the most prevalent across sites (49%/55%/42% at BIR/WLA/PIT, respectively), followed by posttraumatic stress disorder (17%/21%/9% at BIR/WLA/PIT, respectively). WLA had more patients with psychosis (19%) than did the other 2 sites (7% at PIT and 0% at BIR). Overall, mental illness was common among HPACT patients across sites (60%/72%/72% at BIR/WLA/PIT, respectively).

Health care use in the 6 months before HPACT enrollment differed between sites. BIR and PIT had similar rates of ED/urgent care use (46% and 47% sought care over the prior 6 months, respectively), but WLA had the highest rate (62%). However, inpatient admission rates were lowest at WLA (13%) and again similar at BIR (23%) and PIT (26%). BIR patients had the most VA primary care exposure before HPACT entry (71% obtained primary care in the past 6 months), followed by WLA (38%) and PIT (18%). Mental health specialty care was also highest at BIR (60%), followed by PIT (56%), then WLA (39%)

Table 4 presents the prevalence of ATOD abuse or dependence among HPACT patients in the6 months before clinic enrollment. The most commonly misused substances were alcohol (60%/35%/44% at BIR/WLA/PIT, respectively), tobacco (71%/47%/40% at BIR/WLA/PIT, respectively), and cocaine (37%/19%/23% at BIR/WLA/PIT, respectively). PIT had the highest percentages of patients with opioid misuse (21%), followed by BIR (9%) and WLA (6%). Overall, these disorders were prevalent across sites, highest at BIR (94%) and similar at WLA (72%) and PIT (67%).

DISCUSSION

In this case report of early HPACT implementation, strikingly different models of homeless-focused primary care at the geographically distinct facilities were found. The lack of a gold standard primary care medical home for homeless persons—compounded by contrasting local contextual features—led to distinct clinic designs. BIR capitalized on primary care needs among veterans who previously sought housing and relied on the available space within an operating primary care clinic. As WLA already offered primary care for homeless veterans that was colocated with mental health services, the HPACT at this site was devised as an after-hours clinic colocated with the ED.¹¹ At PIT, an existing primary care team with addiction expertise expanded its role to include a focus on homelessness, without needing new space or staff.

The initial HPACT patient cohorts likely reflected these contrasting clinic structures. That is, at WLA, the higher rates of unsheltered patients, prevalence of acute medical conditions and psychotic disorders, and greater ED use was likely driven by ED colocation. The physical location of this site’s HPACT may also speak to greater future decreases in ED use. At BIR, the use of a dedicated HPACT community outreach worker likely led to greater recruitment from emergency shelters. However, the clinic mainly recruited veterans who had previously engaged in VA mainstream primary care services and individuals with ATOD use. At PIT, higher rates of psychotherapy were likely facilitated by the HPACT’s placement within an addiction treatment setting, which may favor psychosocial rehabilitation. The distinctly higher rate of patients with opioid misuse at PIT likely paralleled the ATOD expertise of its providers and/or buprenorphine availability.

The more challenging questions surround the implementation of the current clinic models to address the needs of these patient cohorts and possible avenues to improve each clinic. High rates of chronic medical illness, mental illness, and ATOD use are well known in the homeless veteran and general populations.^2,9 Within these 3 HPACTs, the high rates of medical/mental illness and ATOD use speak favorably about the clinics’ respective recruitment strategies; ie, normative homeless populations with high rates of illness are enrolling in these clinics. However, current service integration practices may be enhanced with the specific knowledge gained from this examination. For example, the very high rates of mood and anxiety disorders at each site suggest a role for an embedded mental health provider with prescribing privileges (the model adopted by BIR) as opposed to mental health referrals used at WLA and PIT. There may also be a role for cognitive behavioral therapy services within these clinics. Similarly, the high rates of ATOD (especially alcohol, tobacco, and cocaine) misuse suggest a role for addiction medicine training among the PCPs (the PIT model) as well as psychosocial rehabilitation for ATOD use within the HPACTs. High rates of chronic medical conditions, such as diabetes, hepatitis C, and hypertension elucidate possible roles for specialty care integration and/or chronic disease management programs tailored to the homeless.

Comparing the housing status of these cohorts can help in the design of future homeless-tailored primary care operations and improve these HPACTs. Most patients across sites lived in VA transitional housing/residential rehabilitation programs. As such, current referral practices at these 3 HPACTs proved sufficient in recruiting this subpopulation of homeless veterans. However, in light of national data showing that the count of unsheltered homeless veterans has not declined as rapidly as the count of homeless veterans overall, the higher numbers of veterans recruited from interim sheltering arrangements suggest a need for enhanced outreach to unsheltered individuals.¹ WLA data suggest that linkages to EDs can advance this objective. BIR data show that targeted outreach in shelters can engage this high-risk, transiently sheltered subpopulation in primary care. At the time of this project, PIT just began using a peer support specialist for outreach to unsheltered veterans. It will be important to evaluate the outcomes of this new referral strategy.

Limitations

These exploratory findings—though from a small convenience sample within a nascent, growing program—generated critical and detailed information to guide ongoing policies and service design. However, these findings have limitations. First, though this research contributes to limited existing literature about the operational design of homeless-focused primary care, no outcome data were included. Although a comprehensive evaluation of all HPACT sites is a distinct and useful endeavor, this project instead offers a rapid, detailed illustration of 3 early-stage clinics. Though smaller in scope, this effort informs other facilities developing homeless-focused primary care initiatives and the larger demonstration project.

Second, a convenience sample of 3 urban facilities with strong academic ties and community commitment to providing services for homeless persons was presented. It may be difficult to translate these findings to communities with fewer resources.

Third, EHR review was used to determine patient demographics, diagnoses, and patterns of health care use. Though EHR review offers detailed information that is unavailable from administrative data, EHR is subject to variations in documentation patterns.

Last, differing characteristics of the homeless veteran population in each city may interact with contrasting HPACT structures to influence the characteristics of patients served. For example, though the data suggest that linkages with the ED may facilitate greater recruitment of unsheltered veterans in WLA, Los Angeles is known to have particularly high rates of unsheltered individuals.¹

CONCLUSIONS

Clinicians, administrators, and researchers in the safety net may benefit from the experience implementing new clinics to recruit and engage homeless veterans in primary care. In a relatively nascent field with few accepted models of care, this paper offers detailed descriptions of newly developed homeless-focused primary care clinics at 3 VA facilities, which can inform other sites undertaking similar initiatives. This study highlights the wide range of approaches to building such clinics, with important variations in structural characteristics such as clinic location and operating hours, as well as within the intricacies of service integration patterns.

Within primary care clinics for homeless adults, this study suggests a role for embedded mental health (medication management and psychotherapy) and substance abuse services, chronic disease management programs tailored to this vulnerable population, and the role of linkages to the ED or community-based outreach to recruit unsheltered homeless patients. To pave a path toward identifying an evidence-based model of homeless-focused primary care, future studies are needed to study nationwide HPACT outcomes, including health status, patient satisfaction, quality of life, housing, and cost-effectiveness.

Acknowledgements
This work was undertaken in part by the VA’s PACT Demonstration Laboratory initiative, supporting and evaluating VA’s transition to a patient-centered medical home. Funding for the PACT Demonstration Laboratory initiative was provided by the VA Office of Patient Care Services. This project received support from the VISN 22 VA Assessment and Improvement Lab for Patient Centered Care (VAIL-PCC) (XVA 65-018; PI: Rubenstein).

Dr. Gabrielian was supported in part by the VA Office of Academic Affiliations, Advanced Fellowship Program in Mental Illness Research and Treatment. Drs. Gelberg and Andersen were supported in part by NIDA DA 022445. Dr. Andersen received additional support from the UCLA/DREW Project EXPORT, National Center on Minority Health and Health Disparities, P20MD000148/P20MD000182. Dr. Broyles was supported by a Career Development Award (CDA 10–014) from the VA Health Services Research & Development service. Dr. Kertesz was supported through funding of VISN 7.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

On a single night in 2012, 62,619 veterans experienced homelessness.¹ With high rates of illness, as well as alcohol, tobacco, and other drug (ATOD) use among homeless adults, ending veteran homelessness is a signature initiative of the VA.^2-4 However, despite increasing efforts to improve health care for homeless individuals, little is known about best practices in homeless-focused primary care.^2,5

With an age-adjusted mortality that is 2 to 10 times higher than that of their housed counterparts, homeless veterans pose a formidable challenge for primary care providers (PCPs).^6,7 The complexity of homeless persons’ primary care needs is compounded by poor social support and the need to navigate priorities (eg, shelter) that compete with medical care.^6,8,9 Moreover, veterans may face unique vulnerabilities conferred by military-specific experiences.^2,10

As of 2012, only 2 VA facilities had primary care clinics tailored to the needs of homeless veterans. McGuire and colleagues built a system of colocated primary care, mental health, and homeless services for mentally ill veterans in Los Angeles, California.¹¹ Over 18 months, this clinic facilitated greater primary and preventive care delivery, though the population’s physical health status did not improve.¹¹ More recently, O’Toole and colleagues implemented a homeless-focused primary care clinic in Providence, Rhode Island.⁶ Compared with a historical sample of homeless veterans in traditional VA primary care, veterans in this homeless-tailored clinic had greater improvements in some chronic disease outcomes.⁶ This clinic also decreased nonacute emergency department (ED) use and hospitalizations for general medical conditions.⁶

Despite these promising outcomes, the VA lacked a nationwide homeless-focused primary care initiative. In 2012 the VA Office of Homeless Programs and the Office of Primary Care Operations funded a national demonstration project to create Homeless Patient-Aligned Care Teams (HPACTs)—primary care medical clinics for homeless veterans—at 32 facilities. This demonstration project guided HPACTs to tailor clinical and social services to homeless veterans’ needs, establish processes to identify and refer appropriate veterans, and integrate distinct services.

There were no explicit instructions that detailed HPACT structure. Because new VA programs must fit local contextual factors, including infrastructure, space, personnel, and institutional/community resources, different models of homeless-focused primary care have evolved.

This article is a case study of HPACTs at 3 of the 32 participating VA facilities, each reflecting a distinct community and organizational context. In light of projected HPACT expansion and concerns that current services are better tailored to sheltered homeless veterans than to their unsheltered peers, there is particular importance to  detailed clinic descriptions that vividly portray the intricate relationships between service design and populations served.¹

METHODS

VA HPACTs established in May 2012 at 3 facilities were examined: Birmingham VAMC in Alabama (BIR), West Los Angeles VAMC in California (WLA), and VA Pittsburgh Healthcare System in Pennsylvania (PIT). Prior to this demonstration project, each facility offered a range of housing/social services and traditional primary care for veterans. These sites are a geographically diverse convenience sample that emerged from existing homeless-focused collaborations among the authors and represent geographically diverse HPACTs.

The national director of VA Homeless Programs formally determined that this comparison constitutes a VA operations activity that is not research.¹² This activity was exempt from Institutional Review Board review.

Study Design

Timed at an early stage of HPACT implementation, this project had 3 aims: (1) To identify noteworthy similarities and/or differences among the initial HPACT clinic structures; (2) To compare and contrast the patient characteristics of veterans enrolled in each of these clinics; and (3) To use these data to inform ongoing HPACT service design.

HPACT program evaluation data are not presented. Rather, a nascent system of care is illustrated that contributes to the limited literature concerning the design and implementation of homeless-focused primary care. Such organizational profiles inform novel program delivery and hold particular utility for heterogeneous populations who are difficult to engage in care.^13,14

Authors at each site independently developed lists of variables that fell within the 3 guiding principles of this demonstration project. These variables were compiled and iteratively reduced to a consolidated table that assessed each clinic, including location, operating hours, methods of patient identification and referral, and linkages to distinct services (eg, primary care, mental health, addiction, and social services).

This table also became a guide for HPACT directors to generate narrative clinic descriptions. Characteristics of VA medical homes that are embraced regardless of patients’ housing status (eg, patient-centered, team-based care) were also incorporated into these descriptions.¹⁵

Patient Characteristics

The VA electronic health record (EHR) was used to identify all patients enrolled in HPACTs at BIR, WLA, and PIT from May 1, 2012 (clinic inception), through September 30, 2012. Authors developed a standardized template for EHR review and coined the first HPACT record as the patient’s index visit. This record was used to code initial housing status, demographics, and acute medical conditions diagnosed/treated. If housing status was not recorded at the index visit, the first preceding informative record was used.

Records for 6 months preceding the index visit were used to identify the presence or absence of common medical conditions, psychiatric diagnoses, and ATOD abuse or dependence. Medical conditions were identified from a list of common outpatient diagnoses from the National Ambulatory Medical Care Survey, supplemented by common conditions among homeless men.^16-18 The EHR problem list (a list of diagnoses, by patient) was used to obtain diagnoses, supplemented by notes from inpatient admissions/discharges, as well as ED, primary care, and subspecialty consultations within 6 months preceding the index visit. Prior VA health care use was ascertained from the EHR review of the same 6-month window, reflecting ED visits, inpatient admissions, primary care visits, subspecialty visits, and individual/group therapy for ATOD or other mental health problems. Data were used to generate site-specific descriptive statistics.

RESULTS

Like all VA hospital-based clinics, a universal EHR captured all medical and social service notes, orders, medications, and administrative records. All facilities had on-site EDs, medical/mental health specialty care, and pharmacies. Social services, including benefits counseling and housing services, were available on site. Table 1 summarizes the HPACT structures at BIR, WLA, and PIT.

Birmingham

The BIR HPACT was devised as a new homeless-focused team located within a VA primary care clinic where other providers continued to see primary care patients. Staff and space were reallocated for this HPACT, which recruited patients in 4 ways: (1) the facility’s primary homeless program, Healthcare for Homeless Veterans, referred patients who previously sought VA housing but who required primary care; (2) an outreach specialist sought homeless veterans in shelters and on the streets; (3) HPACT staff marketed the clinic with presentations and flyers to other VA services and non-VA community agencies; and (4) a referral mechanism within the EHR.

A nurse practitioner was the PCP at this site, supervised by an academic internist experienced in the care of underserved populations, and the HPACT director, a physician certified in internal and addiction medicine. Patients at the BIR HPACT also received care from a social worker, registered nurse, licensed practical nurse, and psychiatrist who received all or a portion of their salaries from this demonstration project. This clinic accommodated walk-in appointments during business hours. Clinicians discussed clinical cases daily, and the full clinical and administrative team met weekly. To promote service integration, HPACT staff attended meetings of the BIR general primary care and Healthcare for Homeless Veterans programs, and vice versa.

West Los Angeles

At WLA, a previously established Homeless Screening Clinic that offered integrated social and medical services for homeless veterans with mental illness was already available during business hours and located within the site’s mental health program.¹¹ However, because ED use for homeless veterans peaked after hours, the new WLA HPACT was established within the WLA ED.

During WLA HPACT hours (3 weekday evenings/week), routine nursing triage occurred for all patients who presented to the ED. However, distinct from other times of day, veterans who were triaged with low-acuity and who were appropriate for outpatient care were given a self-administered, 4-item questionnaire to identify patients who were homeless or at risk for becoming homeless. Veterans who were identified with this screening tool were offered the choice of an ED or HPACT visit. Veterans who chose the latter were assigned to the queue for an HPACT primary care visit instead of the ED.

A physician led the clinical team, with additional services from a mental health clinical nurse specialist and clerks who worked with homeless and/or mental health patients during business hours and provided part-time HPACT coverage. When needed, additional services were provided from colocated ED nurses and social workers. Providers were chosen for their aptitude in culturally responsive communication.

Patients who chose to be seen in HPACT received a primary care visit that also addressed the reason for ED presentation. HPACT staff worked collaboratively, with interdisciplinary team huddles that preceded each clinic session and ended each patient visit. Referrals and social service needs were tracked and monitored by the PCP. Specialty care referrals were also tracked and facilitated when possible with direct communication between HPACT providers and specialty services. Meetings with daytime Homeless Screening Clinic and ED staff facilitated cross-departmental collaborations that helped veterans prepare for and retain housing.

Pittsburgh

The HPACT at PIT evolved from an existing PACT that provided primary care-based addiction services.² That team included an internist credentialed in addiction medicine and experienced in homeless health care, nurse practitioner, nurse care manager, nursing assistant, and clerks. At this site, HPACT providers had subspecialty expertise in the assessment and treatment of ATOD use, certification to prescribe buprenorphine for outpatient opioid detoxification and/or maintenance, and experience engaging homeless and other vulnerable veterans. The existing colocated clinic included 2 additional addiction medicine clinicians and a physician assistant experienced in ATOD use. The PIT HPACT was not restricted to patients with ATOD use.

At PIT, HPACT care was provided during business hours in a flexible model that allowed for walk-in visits. Providers from the existing addiction-focused PACT identified and referred homeless veterans, as well as patients deemed at-risk for becoming homeless. In addition, other homeless veterans who did not have a PCP could be referred through e-consults placed by any VA staff member. If a referred homeless veteran was already enrolled on a PCP’s panel, HPACT facilitated reengagement with the existing provider. Near the end of this data collection period, a peer support specialist also began community outreach to engage both enrolled and potential HPACT patients.

Patient Characteristics

Table 2 presents the demographic and housing characteristics of enrolled HPACT patients at BIR, WLA, and PIT from May 1, 2012, to September 30, 2012. Each site had a similar number of patients (n = 35/47/43 at BIR/WLA/PIT, respectively). Across sites, most patients were male and African American or white. The majority of patients at each site were housed in VA transitional housing/residential rehabilitation programs (33%/32%/40% at BIR/WLA/PIT, respectively). Fewer patients were unsheltered (on the streets or other places not meant for sleeping), though WLA had the most unsheltered patients (26%) compared with BIR (6%) and PIT (2%). BIR had more patients from emergency shelters (14%) than did the other 2 sites (4% at WLA and 0% at PIT). PIT had the most domiciled patients in houses/apartments (26%, compared with 6% each at BIR and WLA), but who were at risk for homelessness.

Table 3 summarizes the diagnoses and VA health care use patterns of these cohorts. In the first week of HPACT care, WLA addressed the most acute medical conditions (81% of patients had≥ 1 common condition), followed by BIR (54%) and PIT (23%). Among chronic conditions, chronic pain was diagnosed in 51% of patients at BIR, 30% of patients at WLA, and 12% of patients at PIT. Hepatitis C diagnoses were most common at WLA (36%), similar at PIT (33%), and lower at BIR (17%). Overall, chronic medical diagnoses were most common among patients at BIR (91%), followed by WLA (85%), and PIT (60%).

Among mental health diagnoses, mood disorders were the most prevalent across sites (49%/55%/42% at BIR/WLA/PIT, respectively), followed by posttraumatic stress disorder (17%/21%/9% at BIR/WLA/PIT, respectively). WLA had more patients with psychosis (19%) than did the other 2 sites (7% at PIT and 0% at BIR). Overall, mental illness was common among HPACT patients across sites (60%/72%/72% at BIR/WLA/PIT, respectively).

Health care use in the 6 months before HPACT enrollment differed between sites. BIR and PIT had similar rates of ED/urgent care use (46% and 47% sought care over the prior 6 months, respectively), but WLA had the highest rate (62%). However, inpatient admission rates were lowest at WLA (13%) and again similar at BIR (23%) and PIT (26%). BIR patients had the most VA primary care exposure before HPACT entry (71% obtained primary care in the past 6 months), followed by WLA (38%) and PIT (18%). Mental health specialty care was also highest at BIR (60%), followed by PIT (56%), then WLA (39%)

Table 4 presents the prevalence of ATOD abuse or dependence among HPACT patients in the6 months before clinic enrollment. The most commonly misused substances were alcohol (60%/35%/44% at BIR/WLA/PIT, respectively), tobacco (71%/47%/40% at BIR/WLA/PIT, respectively), and cocaine (37%/19%/23% at BIR/WLA/PIT, respectively). PIT had the highest percentages of patients with opioid misuse (21%), followed by BIR (9%) and WLA (6%). Overall, these disorders were prevalent across sites, highest at BIR (94%) and similar at WLA (72%) and PIT (67%).

DISCUSSION

In this case report of early HPACT implementation, strikingly different models of homeless-focused primary care at the geographically distinct facilities were found. The lack of a gold standard primary care medical home for homeless persons—compounded by contrasting local contextual features—led to distinct clinic designs. BIR capitalized on primary care needs among veterans who previously sought housing and relied on the available space within an operating primary care clinic. As WLA already offered primary care for homeless veterans that was colocated with mental health services, the HPACT at this site was devised as an after-hours clinic colocated with the ED.¹¹ At PIT, an existing primary care team with addiction expertise expanded its role to include a focus on homelessness, without needing new space or staff.

The initial HPACT patient cohorts likely reflected these contrasting clinic structures. That is, at WLA, the higher rates of unsheltered patients, prevalence of acute medical conditions and psychotic disorders, and greater ED use was likely driven by ED colocation. The physical location of this site’s HPACT may also speak to greater future decreases in ED use. At BIR, the use of a dedicated HPACT community outreach worker likely led to greater recruitment from emergency shelters. However, the clinic mainly recruited veterans who had previously engaged in VA mainstream primary care services and individuals with ATOD use. At PIT, higher rates of psychotherapy were likely facilitated by the HPACT’s placement within an addiction treatment setting, which may favor psychosocial rehabilitation. The distinctly higher rate of patients with opioid misuse at PIT likely paralleled the ATOD expertise of its providers and/or buprenorphine availability.

The more challenging questions surround the implementation of the current clinic models to address the needs of these patient cohorts and possible avenues to improve each clinic. High rates of chronic medical illness, mental illness, and ATOD use are well known in the homeless veteran and general populations.^2,9 Within these 3 HPACTs, the high rates of medical/mental illness and ATOD use speak favorably about the clinics’ respective recruitment strategies; ie, normative homeless populations with high rates of illness are enrolling in these clinics. However, current service integration practices may be enhanced with the specific knowledge gained from this examination. For example, the very high rates of mood and anxiety disorders at each site suggest a role for an embedded mental health provider with prescribing privileges (the model adopted by BIR) as opposed to mental health referrals used at WLA and PIT. There may also be a role for cognitive behavioral therapy services within these clinics. Similarly, the high rates of ATOD (especially alcohol, tobacco, and cocaine) misuse suggest a role for addiction medicine training among the PCPs (the PIT model) as well as psychosocial rehabilitation for ATOD use within the HPACTs. High rates of chronic medical conditions, such as diabetes, hepatitis C, and hypertension elucidate possible roles for specialty care integration and/or chronic disease management programs tailored to the homeless.

Comparing the housing status of these cohorts can help in the design of future homeless-tailored primary care operations and improve these HPACTs. Most patients across sites lived in VA transitional housing/residential rehabilitation programs. As such, current referral practices at these 3 HPACTs proved sufficient in recruiting this subpopulation of homeless veterans. However, in light of national data showing that the count of unsheltered homeless veterans has not declined as rapidly as the count of homeless veterans overall, the higher numbers of veterans recruited from interim sheltering arrangements suggest a need for enhanced outreach to unsheltered individuals.¹ WLA data suggest that linkages to EDs can advance this objective. BIR data show that targeted outreach in shelters can engage this high-risk, transiently sheltered subpopulation in primary care. At the time of this project, PIT just began using a peer support specialist for outreach to unsheltered veterans. It will be important to evaluate the outcomes of this new referral strategy.

Limitations

These exploratory findings—though from a small convenience sample within a nascent, growing program—generated critical and detailed information to guide ongoing policies and service design. However, these findings have limitations. First, though this research contributes to limited existing literature about the operational design of homeless-focused primary care, no outcome data were included. Although a comprehensive evaluation of all HPACT sites is a distinct and useful endeavor, this project instead offers a rapid, detailed illustration of 3 early-stage clinics. Though smaller in scope, this effort informs other facilities developing homeless-focused primary care initiatives and the larger demonstration project.

Second, a convenience sample of 3 urban facilities with strong academic ties and community commitment to providing services for homeless persons was presented. It may be difficult to translate these findings to communities with fewer resources.

Third, EHR review was used to determine patient demographics, diagnoses, and patterns of health care use. Though EHR review offers detailed information that is unavailable from administrative data, EHR is subject to variations in documentation patterns.

Last, differing characteristics of the homeless veteran population in each city may interact with contrasting HPACT structures to influence the characteristics of patients served. For example, though the data suggest that linkages with the ED may facilitate greater recruitment of unsheltered veterans in WLA, Los Angeles is known to have particularly high rates of unsheltered individuals.¹

CONCLUSIONS

Clinicians, administrators, and researchers in the safety net may benefit from the experience implementing new clinics to recruit and engage homeless veterans in primary care. In a relatively nascent field with few accepted models of care, this paper offers detailed descriptions of newly developed homeless-focused primary care clinics at 3 VA facilities, which can inform other sites undertaking similar initiatives. This study highlights the wide range of approaches to building such clinics, with important variations in structural characteristics such as clinic location and operating hours, as well as within the intricacies of service integration patterns.

Within primary care clinics for homeless adults, this study suggests a role for embedded mental health (medication management and psychotherapy) and substance abuse services, chronic disease management programs tailored to this vulnerable population, and the role of linkages to the ED or community-based outreach to recruit unsheltered homeless patients. To pave a path toward identifying an evidence-based model of homeless-focused primary care, future studies are needed to study nationwide HPACT outcomes, including health status, patient satisfaction, quality of life, housing, and cost-effectiveness.

Acknowledgements
This work was undertaken in part by the VA’s PACT Demonstration Laboratory initiative, supporting and evaluating VA’s transition to a patient-centered medical home. Funding for the PACT Demonstration Laboratory initiative was provided by the VA Office of Patient Care Services. This project received support from the VISN 22 VA Assessment and Improvement Lab for Patient Centered Care (VAIL-PCC) (XVA 65-018; PI: Rubenstein).

Dr. Gabrielian was supported in part by the VA Office of Academic Affiliations, Advanced Fellowship Program in Mental Illness Research and Treatment. Drs. Gelberg and Andersen were supported in part by NIDA DA 022445. Dr. Andersen received additional support from the UCLA/DREW Project EXPORT, National Center on Minority Health and Health Disparities, P20MD000148/P20MD000182. Dr. Broyles was supported by a Career Development Award (CDA 10–014) from the VA Health Services Research & Development service. Dr. Kertesz was supported through funding of VISN 7.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

On a single night in 2012, 62,619 veterans experienced homelessness.¹ With high rates of illness, as well as alcohol, tobacco, and other drug (ATOD) use among homeless adults, ending veteran homelessness is a signature initiative of the VA.^2-4 However, despite increasing efforts to improve health care for homeless individuals, little is known about best practices in homeless-focused primary care.^2,5

With an age-adjusted mortality that is 2 to 10 times higher than that of their housed counterparts, homeless veterans pose a formidable challenge for primary care providers (PCPs).^6,7 The complexity of homeless persons’ primary care needs is compounded by poor social support and the need to navigate priorities (eg, shelter) that compete with medical care.^6,8,9 Moreover, veterans may face unique vulnerabilities conferred by military-specific experiences.^2,10

As of 2012, only 2 VA facilities had primary care clinics tailored to the needs of homeless veterans. McGuire and colleagues built a system of colocated primary care, mental health, and homeless services for mentally ill veterans in Los Angeles, California.¹¹ Over 18 months, this clinic facilitated greater primary and preventive care delivery, though the population’s physical health status did not improve.¹¹ More recently, O’Toole and colleagues implemented a homeless-focused primary care clinic in Providence, Rhode Island.⁶ Compared with a historical sample of homeless veterans in traditional VA primary care, veterans in this homeless-tailored clinic had greater improvements in some chronic disease outcomes.⁶ This clinic also decreased nonacute emergency department (ED) use and hospitalizations for general medical conditions.⁶

Despite these promising outcomes, the VA lacked a nationwide homeless-focused primary care initiative. In 2012 the VA Office of Homeless Programs and the Office of Primary Care Operations funded a national demonstration project to create Homeless Patient-Aligned Care Teams (HPACTs)—primary care medical clinics for homeless veterans—at 32 facilities. This demonstration project guided HPACTs to tailor clinical and social services to homeless veterans’ needs, establish processes to identify and refer appropriate veterans, and integrate distinct services.

There were no explicit instructions that detailed HPACT structure. Because new VA programs must fit local contextual factors, including infrastructure, space, personnel, and institutional/community resources, different models of homeless-focused primary care have evolved.

This article is a case study of HPACTs at 3 of the 32 participating VA facilities, each reflecting a distinct community and organizational context. In light of projected HPACT expansion and concerns that current services are better tailored to sheltered homeless veterans than to their unsheltered peers, there is particular importance to  detailed clinic descriptions that vividly portray the intricate relationships between service design and populations served.¹

METHODS

VA HPACTs established in May 2012 at 3 facilities were examined: Birmingham VAMC in Alabama (BIR), West Los Angeles VAMC in California (WLA), and VA Pittsburgh Healthcare System in Pennsylvania (PIT). Prior to this demonstration project, each facility offered a range of housing/social services and traditional primary care for veterans. These sites are a geographically diverse convenience sample that emerged from existing homeless-focused collaborations among the authors and represent geographically diverse HPACTs.

The national director of VA Homeless Programs formally determined that this comparison constitutes a VA operations activity that is not research.¹² This activity was exempt from Institutional Review Board review.

Study Design

Timed at an early stage of HPACT implementation, this project had 3 aims: (1) To identify noteworthy similarities and/or differences among the initial HPACT clinic structures; (2) To compare and contrast the patient characteristics of veterans enrolled in each of these clinics; and (3) To use these data to inform ongoing HPACT service design.

HPACT program evaluation data are not presented. Rather, a nascent system of care is illustrated that contributes to the limited literature concerning the design and implementation of homeless-focused primary care. Such organizational profiles inform novel program delivery and hold particular utility for heterogeneous populations who are difficult to engage in care.^13,14

Authors at each site independently developed lists of variables that fell within the 3 guiding principles of this demonstration project. These variables were compiled and iteratively reduced to a consolidated table that assessed each clinic, including location, operating hours, methods of patient identification and referral, and linkages to distinct services (eg, primary care, mental health, addiction, and social services).

This table also became a guide for HPACT directors to generate narrative clinic descriptions. Characteristics of VA medical homes that are embraced regardless of patients’ housing status (eg, patient-centered, team-based care) were also incorporated into these descriptions.¹⁵

Patient Characteristics

The VA electronic health record (EHR) was used to identify all patients enrolled in HPACTs at BIR, WLA, and PIT from May 1, 2012 (clinic inception), through September 30, 2012. Authors developed a standardized template for EHR review and coined the first HPACT record as the patient’s index visit. This record was used to code initial housing status, demographics, and acute medical conditions diagnosed/treated. If housing status was not recorded at the index visit, the first preceding informative record was used.

Records for 6 months preceding the index visit were used to identify the presence or absence of common medical conditions, psychiatric diagnoses, and ATOD abuse or dependence. Medical conditions were identified from a list of common outpatient diagnoses from the National Ambulatory Medical Care Survey, supplemented by common conditions among homeless men.^16-18 The EHR problem list (a list of diagnoses, by patient) was used to obtain diagnoses, supplemented by notes from inpatient admissions/discharges, as well as ED, primary care, and subspecialty consultations within 6 months preceding the index visit. Prior VA health care use was ascertained from the EHR review of the same 6-month window, reflecting ED visits, inpatient admissions, primary care visits, subspecialty visits, and individual/group therapy for ATOD or other mental health problems. Data were used to generate site-specific descriptive statistics.

RESULTS

Like all VA hospital-based clinics, a universal EHR captured all medical and social service notes, orders, medications, and administrative records. All facilities had on-site EDs, medical/mental health specialty care, and pharmacies. Social services, including benefits counseling and housing services, were available on site. Table 1 summarizes the HPACT structures at BIR, WLA, and PIT.

Birmingham

The BIR HPACT was devised as a new homeless-focused team located within a VA primary care clinic where other providers continued to see primary care patients. Staff and space were reallocated for this HPACT, which recruited patients in 4 ways: (1) the facility’s primary homeless program, Healthcare for Homeless Veterans, referred patients who previously sought VA housing but who required primary care; (2) an outreach specialist sought homeless veterans in shelters and on the streets; (3) HPACT staff marketed the clinic with presentations and flyers to other VA services and non-VA community agencies; and (4) a referral mechanism within the EHR.

A nurse practitioner was the PCP at this site, supervised by an academic internist experienced in the care of underserved populations, and the HPACT director, a physician certified in internal and addiction medicine. Patients at the BIR HPACT also received care from a social worker, registered nurse, licensed practical nurse, and psychiatrist who received all or a portion of their salaries from this demonstration project. This clinic accommodated walk-in appointments during business hours. Clinicians discussed clinical cases daily, and the full clinical and administrative team met weekly. To promote service integration, HPACT staff attended meetings of the BIR general primary care and Healthcare for Homeless Veterans programs, and vice versa.

West Los Angeles

At WLA, a previously established Homeless Screening Clinic that offered integrated social and medical services for homeless veterans with mental illness was already available during business hours and located within the site’s mental health program.¹¹ However, because ED use for homeless veterans peaked after hours, the new WLA HPACT was established within the WLA ED.

During WLA HPACT hours (3 weekday evenings/week), routine nursing triage occurred for all patients who presented to the ED. However, distinct from other times of day, veterans who were triaged with low-acuity and who were appropriate for outpatient care were given a self-administered, 4-item questionnaire to identify patients who were homeless or at risk for becoming homeless. Veterans who were identified with this screening tool were offered the choice of an ED or HPACT visit. Veterans who chose the latter were assigned to the queue for an HPACT primary care visit instead of the ED.

A physician led the clinical team, with additional services from a mental health clinical nurse specialist and clerks who worked with homeless and/or mental health patients during business hours and provided part-time HPACT coverage. When needed, additional services were provided from colocated ED nurses and social workers. Providers were chosen for their aptitude in culturally responsive communication.

Patients who chose to be seen in HPACT received a primary care visit that also addressed the reason for ED presentation. HPACT staff worked collaboratively, with interdisciplinary team huddles that preceded each clinic session and ended each patient visit. Referrals and social service needs were tracked and monitored by the PCP. Specialty care referrals were also tracked and facilitated when possible with direct communication between HPACT providers and specialty services. Meetings with daytime Homeless Screening Clinic and ED staff facilitated cross-departmental collaborations that helped veterans prepare for and retain housing.

Pittsburgh

The HPACT at PIT evolved from an existing PACT that provided primary care-based addiction services.² That team included an internist credentialed in addiction medicine and experienced in homeless health care, nurse practitioner, nurse care manager, nursing assistant, and clerks. At this site, HPACT providers had subspecialty expertise in the assessment and treatment of ATOD use, certification to prescribe buprenorphine for outpatient opioid detoxification and/or maintenance, and experience engaging homeless and other vulnerable veterans. The existing colocated clinic included 2 additional addiction medicine clinicians and a physician assistant experienced in ATOD use. The PIT HPACT was not restricted to patients with ATOD use.

At PIT, HPACT care was provided during business hours in a flexible model that allowed for walk-in visits. Providers from the existing addiction-focused PACT identified and referred homeless veterans, as well as patients deemed at-risk for becoming homeless. In addition, other homeless veterans who did not have a PCP could be referred through e-consults placed by any VA staff member. If a referred homeless veteran was already enrolled on a PCP’s panel, HPACT facilitated reengagement with the existing provider. Near the end of this data collection period, a peer support specialist also began community outreach to engage both enrolled and potential HPACT patients.

Patient Characteristics

Table 2 presents the demographic and housing characteristics of enrolled HPACT patients at BIR, WLA, and PIT from May 1, 2012, to September 30, 2012. Each site had a similar number of patients (n = 35/47/43 at BIR/WLA/PIT, respectively). Across sites, most patients were male and African American or white. The majority of patients at each site were housed in VA transitional housing/residential rehabilitation programs (33%/32%/40% at BIR/WLA/PIT, respectively). Fewer patients were unsheltered (on the streets or other places not meant for sleeping), though WLA had the most unsheltered patients (26%) compared with BIR (6%) and PIT (2%). BIR had more patients from emergency shelters (14%) than did the other 2 sites (4% at WLA and 0% at PIT). PIT had the most domiciled patients in houses/apartments (26%, compared with 6% each at BIR and WLA), but who were at risk for homelessness.

Table 3 summarizes the diagnoses and VA health care use patterns of these cohorts. In the first week of HPACT care, WLA addressed the most acute medical conditions (81% of patients had≥ 1 common condition), followed by BIR (54%) and PIT (23%). Among chronic conditions, chronic pain was diagnosed in 51% of patients at BIR, 30% of patients at WLA, and 12% of patients at PIT. Hepatitis C diagnoses were most common at WLA (36%), similar at PIT (33%), and lower at BIR (17%). Overall, chronic medical diagnoses were most common among patients at BIR (91%), followed by WLA (85%), and PIT (60%).

Among mental health diagnoses, mood disorders were the most prevalent across sites (49%/55%/42% at BIR/WLA/PIT, respectively), followed by posttraumatic stress disorder (17%/21%/9% at BIR/WLA/PIT, respectively). WLA had more patients with psychosis (19%) than did the other 2 sites (7% at PIT and 0% at BIR). Overall, mental illness was common among HPACT patients across sites (60%/72%/72% at BIR/WLA/PIT, respectively).

Health care use in the 6 months before HPACT enrollment differed between sites. BIR and PIT had similar rates of ED/urgent care use (46% and 47% sought care over the prior 6 months, respectively), but WLA had the highest rate (62%). However, inpatient admission rates were lowest at WLA (13%) and again similar at BIR (23%) and PIT (26%). BIR patients had the most VA primary care exposure before HPACT entry (71% obtained primary care in the past 6 months), followed by WLA (38%) and PIT (18%). Mental health specialty care was also highest at BIR (60%), followed by PIT (56%), then WLA (39%)

Table 4 presents the prevalence of ATOD abuse or dependence among HPACT patients in the6 months before clinic enrollment. The most commonly misused substances were alcohol (60%/35%/44% at BIR/WLA/PIT, respectively), tobacco (71%/47%/40% at BIR/WLA/PIT, respectively), and cocaine (37%/19%/23% at BIR/WLA/PIT, respectively). PIT had the highest percentages of patients with opioid misuse (21%), followed by BIR (9%) and WLA (6%). Overall, these disorders were prevalent across sites, highest at BIR (94%) and similar at WLA (72%) and PIT (67%).

DISCUSSION

In this case report of early HPACT implementation, strikingly different models of homeless-focused primary care at the geographically distinct facilities were found. The lack of a gold standard primary care medical home for homeless persons—compounded by contrasting local contextual features—led to distinct clinic designs. BIR capitalized on primary care needs among veterans who previously sought housing and relied on the available space within an operating primary care clinic. As WLA already offered primary care for homeless veterans that was colocated with mental health services, the HPACT at this site was devised as an after-hours clinic colocated with the ED.¹¹ At PIT, an existing primary care team with addiction expertise expanded its role to include a focus on homelessness, without needing new space or staff.

The initial HPACT patient cohorts likely reflected these contrasting clinic structures. That is, at WLA, the higher rates of unsheltered patients, prevalence of acute medical conditions and psychotic disorders, and greater ED use was likely driven by ED colocation. The physical location of this site’s HPACT may also speak to greater future decreases in ED use. At BIR, the use of a dedicated HPACT community outreach worker likely led to greater recruitment from emergency shelters. However, the clinic mainly recruited veterans who had previously engaged in VA mainstream primary care services and individuals with ATOD use. At PIT, higher rates of psychotherapy were likely facilitated by the HPACT’s placement within an addiction treatment setting, which may favor psychosocial rehabilitation. The distinctly higher rate of patients with opioid misuse at PIT likely paralleled the ATOD expertise of its providers and/or buprenorphine availability.

The more challenging questions surround the implementation of the current clinic models to address the needs of these patient cohorts and possible avenues to improve each clinic. High rates of chronic medical illness, mental illness, and ATOD use are well known in the homeless veteran and general populations.^2,9 Within these 3 HPACTs, the high rates of medical/mental illness and ATOD use speak favorably about the clinics’ respective recruitment strategies; ie, normative homeless populations with high rates of illness are enrolling in these clinics. However, current service integration practices may be enhanced with the specific knowledge gained from this examination. For example, the very high rates of mood and anxiety disorders at each site suggest a role for an embedded mental health provider with prescribing privileges (the model adopted by BIR) as opposed to mental health referrals used at WLA and PIT. There may also be a role for cognitive behavioral therapy services within these clinics. Similarly, the high rates of ATOD (especially alcohol, tobacco, and cocaine) misuse suggest a role for addiction medicine training among the PCPs (the PIT model) as well as psychosocial rehabilitation for ATOD use within the HPACTs. High rates of chronic medical conditions, such as diabetes, hepatitis C, and hypertension elucidate possible roles for specialty care integration and/or chronic disease management programs tailored to the homeless.

Comparing the housing status of these cohorts can help in the design of future homeless-tailored primary care operations and improve these HPACTs. Most patients across sites lived in VA transitional housing/residential rehabilitation programs. As such, current referral practices at these 3 HPACTs proved sufficient in recruiting this subpopulation of homeless veterans. However, in light of national data showing that the count of unsheltered homeless veterans has not declined as rapidly as the count of homeless veterans overall, the higher numbers of veterans recruited from interim sheltering arrangements suggest a need for enhanced outreach to unsheltered individuals.¹ WLA data suggest that linkages to EDs can advance this objective. BIR data show that targeted outreach in shelters can engage this high-risk, transiently sheltered subpopulation in primary care. At the time of this project, PIT just began using a peer support specialist for outreach to unsheltered veterans. It will be important to evaluate the outcomes of this new referral strategy.

Limitations

These exploratory findings—though from a small convenience sample within a nascent, growing program—generated critical and detailed information to guide ongoing policies and service design. However, these findings have limitations. First, though this research contributes to limited existing literature about the operational design of homeless-focused primary care, no outcome data were included. Although a comprehensive evaluation of all HPACT sites is a distinct and useful endeavor, this project instead offers a rapid, detailed illustration of 3 early-stage clinics. Though smaller in scope, this effort informs other facilities developing homeless-focused primary care initiatives and the larger demonstration project.

Second, a convenience sample of 3 urban facilities with strong academic ties and community commitment to providing services for homeless persons was presented. It may be difficult to translate these findings to communities with fewer resources.

Third, EHR review was used to determine patient demographics, diagnoses, and patterns of health care use. Though EHR review offers detailed information that is unavailable from administrative data, EHR is subject to variations in documentation patterns.

Last, differing characteristics of the homeless veteran population in each city may interact with contrasting HPACT structures to influence the characteristics of patients served. For example, though the data suggest that linkages with the ED may facilitate greater recruitment of unsheltered veterans in WLA, Los Angeles is known to have particularly high rates of unsheltered individuals.¹

CONCLUSIONS

Clinicians, administrators, and researchers in the safety net may benefit from the experience implementing new clinics to recruit and engage homeless veterans in primary care. In a relatively nascent field with few accepted models of care, this paper offers detailed descriptions of newly developed homeless-focused primary care clinics at 3 VA facilities, which can inform other sites undertaking similar initiatives. This study highlights the wide range of approaches to building such clinics, with important variations in structural characteristics such as clinic location and operating hours, as well as within the intricacies of service integration patterns.

Within primary care clinics for homeless adults, this study suggests a role for embedded mental health (medication management and psychotherapy) and substance abuse services, chronic disease management programs tailored to this vulnerable population, and the role of linkages to the ED or community-based outreach to recruit unsheltered homeless patients. To pave a path toward identifying an evidence-based model of homeless-focused primary care, future studies are needed to study nationwide HPACT outcomes, including health status, patient satisfaction, quality of life, housing, and cost-effectiveness.

Acknowledgements
This work was undertaken in part by the VA’s PACT Demonstration Laboratory initiative, supporting and evaluating VA’s transition to a patient-centered medical home. Funding for the PACT Demonstration Laboratory initiative was provided by the VA Office of Patient Care Services. This project received support from the VISN 22 VA Assessment and Improvement Lab for Patient Centered Care (VAIL-PCC) (XVA 65-018; PI: Rubenstein).

Dr. Gabrielian was supported in part by the VA Office of Academic Affiliations, Advanced Fellowship Program in Mental Illness Research and Treatment. Drs. Gelberg and Andersen were supported in part by NIDA DA 022445. Dr. Andersen received additional support from the UCLA/DREW Project EXPORT, National Center on Minority Health and Health Disparities, P20MD000148/P20MD000182. Dr. Broyles was supported by a Career Development Award (CDA 10–014) from the VA Health Services Research & Development service. Dr. Kertesz was supported through funding of VISN 7.

Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Anxiety is a necessary and natural reaction to trauma, but, sometimes, anxiety symptoms become excessive and problematic, as experienced with posttraumatic stress disorder (PTSD). Some patients who struggle with PTSD endure a relentless apprehension so intense that it keeps them from participating in everyday activities, such as attending work and partaking in social activities. Associated anxiety symptoms severely impair everyday function and include increased heart rate, sweating, intrusive images, poor attention, fear, or insomnia. Posttraumatic stress disorder symptoms often lead to occupational dysfunction, relationship difficulty, and numerous other functional impairments.

Approximately 300,000 veterans meet the criteria for PTSD related to ongoing or recent wars.¹ The veteran does not bear the personal and functional burden alone; however, the financial load is felt throughout society. One recent study suggests that for veterans diagnosed with PTSD, the first 2 years after deployment cost society an estimated $7,000 per individial.² Current research suggests that this potentially debilitating disorder occurs in about 14% of Operation Iraqi Freedom/Operation Enduring Freedom combat troops, whereas the similar U.S. demographic population experiences PTSD at a rate of about 7%.^1,3 The ongoing military trauma exposures are compelling the mental health community to establish efficient and effective treatment options.^4,5

Several treatment strategies exist to reduce PTSD symptoms, but health care professionals must seek a balance between therapeutic benefit and cost. The treatment of PTSD is diverse and variable; however, in the most recent Clinical Practice Guideline (CPG) for PTSD, the VA and DoD specifically endorse some psychotherapeutic interventions while dissuading the use of others.⁶ Of note, the VA and DoD CPG strongly encourages Stress Inoculation Training (SIT) and similar cognitive therapies aimed at guiding patients through the process of consciously understanding the relationship between thoughts and feelings and then modifying thoughts to appropriately manage stressors.⁶ Meanwhile, group psychotherapy has been determined to be “somewhat helpful.”⁶ Even though cognitive- and group-based therapies have long been established as efficacious for numerous psychological disorders (depression, obsessive compulsive disorder, eating disorders, etc), neither the American Group Psychotherapy Association nor the VA and DoD CPG directly endorse the use of group cognitive behavioral therapy (GCBT) for the treatment of PTSD.^6,7 However, both VA and DoD mental health providers commonly practice CBT and various group psychotherapies for the treatment of PTSD.

Despite the widespread use of CBT, there is a gap in the clinical understanding of the evidence supporting GCBT for PTSD. The goal of this synthesis was to understand the efficacy of treating PTSD symptoms with group psychotherapy. To begin this investigation, the following PICO (population, intervention, comparison, outcome) question was asked: In adults diagnosed with PTSD, how effective is group cognitive behavioral therapy in reducing PTSD-related symptoms?

Methods

Research articles addressing the use of GCBT in PTSD were obtained via database searches that took place during October 2012 (Table). Searched databases included the Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews Randomized Controlled Trials, Psychological Information (PsycINFO), and Public Medicine (PubMed).

The PubMed database was searched using the following MeSH (medical subject heading) terms: “psychotherapy, group” and “stress disorders, post-traumatic” and “cognitive therapy.” Limitations were set to include only patients aged ≥ 18 years, results in English, those involving human subjects, and articles published within the past 5 years. A manual search of references was also conducted, and relevant articles were retained.

Articles that addressed primary substance abuse, other DSM Axis I disorders, intimate partner violence, or family issues were excluded from the evidence sample due to concerns of an alternate treatment focus. Articles with a focus on telehealth or alternative medicine were considered confounding to the scope of this review were also excluded. It was also noted that the term CBT is used collectively for an umbrella of treatments; however, treatments that focused on elements other than the components of CBT being delivered in a group were not included. To prevent duplication of the results, research from an inclusive review was not considered individually.

SUMMARY OF EVIDENCE

Six works fulfilled the PICO criteria and were of sufficient quality to be synthesized. Of the 6 articles retained for synthesis, 2 were high-level reviews. Both reviews supported the use of GCBT for PTSD treatment. Barrera and colleagues reported an overall large effect size regardless of the presence of exposure in-group among the 12 treatment conditions and 651 study participants.⁸ These researchers also reported that in-group exposure did not further traumatize other group members.

Similarly, although a notably older and smaller review, Bisson and Andrew reported a significant standard mean deviation between 4 GCBT treatment and wait list controls. These reviewers did not find a significant difference between trauma- and nontrauma-focused treatment groups. The reviews also noted that individual psychotherapy and/or pharmacotherapy was most often continued throughout the reviewed studies.^8,9

The 4 other studies contribute substantively to this synthesis but arguably represent lower evidence quality. A large longitudinal study of 496 Australian veterans reported a large effect size that was sustained 9 months after treatment began.¹⁰ These researchers used an intensive outpatient program that included medication and other treatment modalities as the basis for GCBT delivery. They reported that the majority of the patients revealed improvement in PTSD symptoms.

Another study sampled a similar group of 10 combat veterans but focused particular attention on sleep-related PTSD symptoms of insomnia, nightmares, and sleep quality.¹¹ Although these researchers were unable to report a significant difference in overall PTSD symptoms for the 8 subjects who completed the protocol, they did find a large effect size on insomnia severity and a medium effect size on sleep quality. Regular treatment, including medication, continued throughout this study.

Other researchers reported a medium effect size on PTSD symptoms while using GCBT in a heterogeneous group with various anxiety disorders, including obsessive compulsive disorder, generalized anxiety disorder, social phobia, panic disorders, and PTSD.¹² Although reporting similar results as all other included studies, this study has some significant limitations, including a 26% dropout rate among the 152 participants. The final study included for synthesis reported a remarkable 67% elimination of the PTSD diagnosis among 6 motor vehicle accident survivors in the small, uncontrolled study.¹³ Concomitant treatments, including medications, were not reported in detail for these 4 studies except as mentioned.

As a whole, the 6 studies revealed some appreciable commonalities. Time since diagnosis did not seem to influence the results. Attrition was consistently found to be similar to other PTSD treatments. The reported session topics were loosely based on common CBT tenets (ie, education, challenging cognitions, and relaxation techniques) and were typically similar among treatment groups, including the use of homework.

DISCUSSION

As the diagnosis of PTSD increases to unfamiliar levels, GCBT has the potential to be helpful to clinicians and patients seeking alternatives to their current treatments.^1,4,14 The reported results imply that GCBT can be useful in PTSD symptom reduction. This could be particularly useful to VA and military providers or rural providers operating with limited resources.

Treatment protocols are not well established and should be approached with care prior to the establishment of CBT treatment groups for those diagnosed with PTSD. Session overviews and descriptions, such as those mentioned in Thompson and colleagues, could provide a reference point for future use.¹³

Also worth considering, CBT can be an ambiguous term requiring deliberate definition within treatment protocols. As noted in the VA and DoD CPG, exposure- and trauma-focused treatment designs can be efficacious, but these elements do not seem to be required within the GCBT treatment setting.

The current research also suggests GCBT efficacy regardless of the index trauma. This does not suggest that heterogeneous groups were frequently studied nor can conclusions be drawn regarding heterogeneous treatment groups. Elements such as group size and session length are inconsistently reported and require specific consideration as well. There is a distinct lack of research directly comparing individual CBT with GCBT directly, which prohibits meaningful conclusions regarding PTSD symptom reduction. This research gap may well have influenced the recommendations within the VA and DoD CPG. Although some higher quality studies exist, many of the published reports on GCBT have noteworthy design flaw, such as inadequate controls and statistical analysis.

LIMITATIONS

There are some limitations to this literature synthesis. Although the search was limited to the past 5 years, the inclusion of reviews accounts for older evidence. As alluded to earlier, the lack of a standardized GCBT treatment protocol challenges results comparisons as well. The consequent treatment variations make direct interstudy comparison and synthesis difficult. Similarly, outcome measures varied between studies. Also, group psychotherapy is well established and accepted. Therefore, much of the supporting research was accomplished outside the parameters of this literature search. This empirical view of group psychotherapy among mental health providers may also contribute to the lack of available research.

It is also worth noting that studies finding neutral or negative results are often unpublished. This publication bias could account for the lack of available evidence. The research reports do not consistently report therapist qualifications; however, board certificates in group psychotherapy and CBT are undeniably variables available for debate. The inclusion of uncontrolled trials limits these findings as well. Although the above limitations are not exhaustive, they do provide necessary caveats to future generalizations.

FUTURE IMPLICATIONS

Perhaps the most important information to gain from future research is that of treatment outcomes. Studies that include a detailed outcome evaluation could reveal patient satisfaction, efficacy, and financial considerations. In the presence of adequate supportive data, GCBT could contribute outcome data regarding trauma survivor symptom normalization, peer support formation, access to care, treatment efficiency, and health care resources utilization. As noted in Barrera and colleagues, future analysis will require a greater volume of trials with an overall increase in methodological rigor.⁸

Current research has demonstrated a solid base from which to spawn specific treatment protocols. The available research is investigational in terms of treatment procedures. Replication of these studies could dictate treatment protocol and contribute substantively to future VA and DoD CPG updates. Future researchers should consider the use of a standard PTSD symptom assessment tool to make interstudy comparisons more meaningful. The length of treatment and exposure elements should be targeted specifically in future research as these components currently vary the most.

The military represents an obvious avenue for future research due to increased PTSD diagnosis in recent years. Although the etiology of the increase in PTSD is unclear and most likely multifactorial (decreased resilience, increased awareness, increased pursuit of secondary gains, etc), the need for treatment options is apparent.¹ Group cohesion has been shown to be a core component of successful group psychotherapy, so military members who are accustomed to unit cohesion might represent a uniquely suitable population for this modality.¹⁵ Interestingly and for reasons not currently understood, veterans do not see effects of therapy as large as their civilian counterparts.⁸ This underscores the need for further evaluation of military-specific outcomes.

CONCLUSIONS

Although the available evidence is not robust, results do support the careful use of GCBT as an effective treatment for PTSD symptom reduction.⁸ Group psychotherapy has been generally regarded as an efficacious and cost-effective method to achieve similar outcomes to individual therapy. Increasing PTSD prevalence compels mental health care providers to explore all available treatment options. The potential for GCBT as an option is exciting, especially for mental health providers and those with limited resources. Rising health care standards and the current national fiscal situation is dictating a reevaluation of treatment options; so perhaps all health care providers will soon consider the use of GCBT.

As with any group assignment, the clinician should carefully consider the individual’s suitability and desire for group participation.¹⁶ With GCBT, providers could facilitate the relief of relentless apprehension and functional impairment for several patients simultaneously. Although there are many details left to explore regarding the use of GCBT for PTSD, the therapy’s foundation for use as a PTSD treatment is apparent.

Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Anxiety is a necessary and natural reaction to trauma, but, sometimes, anxiety symptoms become excessive and problematic, as experienced with posttraumatic stress disorder (PTSD). Some patients who struggle with PTSD endure a relentless apprehension so intense that it keeps them from participating in everyday activities, such as attending work and partaking in social activities. Associated anxiety symptoms severely impair everyday function and include increased heart rate, sweating, intrusive images, poor attention, fear, or insomnia. Posttraumatic stress disorder symptoms often lead to occupational dysfunction, relationship difficulty, and numerous other functional impairments.

Approximately 300,000 veterans meet the criteria for PTSD related to ongoing or recent wars.¹ The veteran does not bear the personal and functional burden alone; however, the financial load is felt throughout society. One recent study suggests that for veterans diagnosed with PTSD, the first 2 years after deployment cost society an estimated $7,000 per individial.² Current research suggests that this potentially debilitating disorder occurs in about 14% of Operation Iraqi Freedom/Operation Enduring Freedom combat troops, whereas the similar U.S. demographic population experiences PTSD at a rate of about 7%.^1,3 The ongoing military trauma exposures are compelling the mental health community to establish efficient and effective treatment options.^4,5

Several treatment strategies exist to reduce PTSD symptoms, but health care professionals must seek a balance between therapeutic benefit and cost. The treatment of PTSD is diverse and variable; however, in the most recent Clinical Practice Guideline (CPG) for PTSD, the VA and DoD specifically endorse some psychotherapeutic interventions while dissuading the use of others.⁶ Of note, the VA and DoD CPG strongly encourages Stress Inoculation Training (SIT) and similar cognitive therapies aimed at guiding patients through the process of consciously understanding the relationship between thoughts and feelings and then modifying thoughts to appropriately manage stressors.⁶ Meanwhile, group psychotherapy has been determined to be “somewhat helpful.”⁶ Even though cognitive- and group-based therapies have long been established as efficacious for numerous psychological disorders (depression, obsessive compulsive disorder, eating disorders, etc), neither the American Group Psychotherapy Association nor the VA and DoD CPG directly endorse the use of group cognitive behavioral therapy (GCBT) for the treatment of PTSD.^6,7 However, both VA and DoD mental health providers commonly practice CBT and various group psychotherapies for the treatment of PTSD.

Despite the widespread use of CBT, there is a gap in the clinical understanding of the evidence supporting GCBT for PTSD. The goal of this synthesis was to understand the efficacy of treating PTSD symptoms with group psychotherapy. To begin this investigation, the following PICO (population, intervention, comparison, outcome) question was asked: In adults diagnosed with PTSD, how effective is group cognitive behavioral therapy in reducing PTSD-related symptoms?

Methods

Research articles addressing the use of GCBT in PTSD were obtained via database searches that took place during October 2012 (Table). Searched databases included the Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews Randomized Controlled Trials, Psychological Information (PsycINFO), and Public Medicine (PubMed).

The PubMed database was searched using the following MeSH (medical subject heading) terms: “psychotherapy, group” and “stress disorders, post-traumatic” and “cognitive therapy.” Limitations were set to include only patients aged ≥ 18 years, results in English, those involving human subjects, and articles published within the past 5 years. A manual search of references was also conducted, and relevant articles were retained.

Articles that addressed primary substance abuse, other DSM Axis I disorders, intimate partner violence, or family issues were excluded from the evidence sample due to concerns of an alternate treatment focus. Articles with a focus on telehealth or alternative medicine were considered confounding to the scope of this review were also excluded. It was also noted that the term CBT is used collectively for an umbrella of treatments; however, treatments that focused on elements other than the components of CBT being delivered in a group were not included. To prevent duplication of the results, research from an inclusive review was not considered individually.

SUMMARY OF EVIDENCE

Six works fulfilled the PICO criteria and were of sufficient quality to be synthesized. Of the 6 articles retained for synthesis, 2 were high-level reviews. Both reviews supported the use of GCBT for PTSD treatment. Barrera and colleagues reported an overall large effect size regardless of the presence of exposure in-group among the 12 treatment conditions and 651 study participants.⁸ These researchers also reported that in-group exposure did not further traumatize other group members.

Similarly, although a notably older and smaller review, Bisson and Andrew reported a significant standard mean deviation between 4 GCBT treatment and wait list controls. These reviewers did not find a significant difference between trauma- and nontrauma-focused treatment groups. The reviews also noted that individual psychotherapy and/or pharmacotherapy was most often continued throughout the reviewed studies.^8,9

The 4 other studies contribute substantively to this synthesis but arguably represent lower evidence quality. A large longitudinal study of 496 Australian veterans reported a large effect size that was sustained 9 months after treatment began.¹⁰ These researchers used an intensive outpatient program that included medication and other treatment modalities as the basis for GCBT delivery. They reported that the majority of the patients revealed improvement in PTSD symptoms.

Another study sampled a similar group of 10 combat veterans but focused particular attention on sleep-related PTSD symptoms of insomnia, nightmares, and sleep quality.¹¹ Although these researchers were unable to report a significant difference in overall PTSD symptoms for the 8 subjects who completed the protocol, they did find a large effect size on insomnia severity and a medium effect size on sleep quality. Regular treatment, including medication, continued throughout this study.

Other researchers reported a medium effect size on PTSD symptoms while using GCBT in a heterogeneous group with various anxiety disorders, including obsessive compulsive disorder, generalized anxiety disorder, social phobia, panic disorders, and PTSD.¹² Although reporting similar results as all other included studies, this study has some significant limitations, including a 26% dropout rate among the 152 participants. The final study included for synthesis reported a remarkable 67% elimination of the PTSD diagnosis among 6 motor vehicle accident survivors in the small, uncontrolled study.¹³ Concomitant treatments, including medications, were not reported in detail for these 4 studies except as mentioned.

As a whole, the 6 studies revealed some appreciable commonalities. Time since diagnosis did not seem to influence the results. Attrition was consistently found to be similar to other PTSD treatments. The reported session topics were loosely based on common CBT tenets (ie, education, challenging cognitions, and relaxation techniques) and were typically similar among treatment groups, including the use of homework.

DISCUSSION

As the diagnosis of PTSD increases to unfamiliar levels, GCBT has the potential to be helpful to clinicians and patients seeking alternatives to their current treatments.^1,4,14 The reported results imply that GCBT can be useful in PTSD symptom reduction. This could be particularly useful to VA and military providers or rural providers operating with limited resources.

Treatment protocols are not well established and should be approached with care prior to the establishment of CBT treatment groups for those diagnosed with PTSD. Session overviews and descriptions, such as those mentioned in Thompson and colleagues, could provide a reference point for future use.¹³

Also worth considering, CBT can be an ambiguous term requiring deliberate definition within treatment protocols. As noted in the VA and DoD CPG, exposure- and trauma-focused treatment designs can be efficacious, but these elements do not seem to be required within the GCBT treatment setting.

The current research also suggests GCBT efficacy regardless of the index trauma. This does not suggest that heterogeneous groups were frequently studied nor can conclusions be drawn regarding heterogeneous treatment groups. Elements such as group size and session length are inconsistently reported and require specific consideration as well. There is a distinct lack of research directly comparing individual CBT with GCBT directly, which prohibits meaningful conclusions regarding PTSD symptom reduction. This research gap may well have influenced the recommendations within the VA and DoD CPG. Although some higher quality studies exist, many of the published reports on GCBT have noteworthy design flaw, such as inadequate controls and statistical analysis.

LIMITATIONS

There are some limitations to this literature synthesis. Although the search was limited to the past 5 years, the inclusion of reviews accounts for older evidence. As alluded to earlier, the lack of a standardized GCBT treatment protocol challenges results comparisons as well. The consequent treatment variations make direct interstudy comparison and synthesis difficult. Similarly, outcome measures varied between studies. Also, group psychotherapy is well established and accepted. Therefore, much of the supporting research was accomplished outside the parameters of this literature search. This empirical view of group psychotherapy among mental health providers may also contribute to the lack of available research.

It is also worth noting that studies finding neutral or negative results are often unpublished. This publication bias could account for the lack of available evidence. The research reports do not consistently report therapist qualifications; however, board certificates in group psychotherapy and CBT are undeniably variables available for debate. The inclusion of uncontrolled trials limits these findings as well. Although the above limitations are not exhaustive, they do provide necessary caveats to future generalizations.

FUTURE IMPLICATIONS

Perhaps the most important information to gain from future research is that of treatment outcomes. Studies that include a detailed outcome evaluation could reveal patient satisfaction, efficacy, and financial considerations. In the presence of adequate supportive data, GCBT could contribute outcome data regarding trauma survivor symptom normalization, peer support formation, access to care, treatment efficiency, and health care resources utilization. As noted in Barrera and colleagues, future analysis will require a greater volume of trials with an overall increase in methodological rigor.⁸

Current research has demonstrated a solid base from which to spawn specific treatment protocols. The available research is investigational in terms of treatment procedures. Replication of these studies could dictate treatment protocol and contribute substantively to future VA and DoD CPG updates. Future researchers should consider the use of a standard PTSD symptom assessment tool to make interstudy comparisons more meaningful. The length of treatment and exposure elements should be targeted specifically in future research as these components currently vary the most.

The military represents an obvious avenue for future research due to increased PTSD diagnosis in recent years. Although the etiology of the increase in PTSD is unclear and most likely multifactorial (decreased resilience, increased awareness, increased pursuit of secondary gains, etc), the need for treatment options is apparent.¹ Group cohesion has been shown to be a core component of successful group psychotherapy, so military members who are accustomed to unit cohesion might represent a uniquely suitable population for this modality.¹⁵ Interestingly and for reasons not currently understood, veterans do not see effects of therapy as large as their civilian counterparts.⁸ This underscores the need for further evaluation of military-specific outcomes.

CONCLUSIONS

Although the available evidence is not robust, results do support the careful use of GCBT as an effective treatment for PTSD symptom reduction.⁸ Group psychotherapy has been generally regarded as an efficacious and cost-effective method to achieve similar outcomes to individual therapy. Increasing PTSD prevalence compels mental health care providers to explore all available treatment options. The potential for GCBT as an option is exciting, especially for mental health providers and those with limited resources. Rising health care standards and the current national fiscal situation is dictating a reevaluation of treatment options; so perhaps all health care providers will soon consider the use of GCBT.

As with any group assignment, the clinician should carefully consider the individual’s suitability and desire for group participation.¹⁶ With GCBT, providers could facilitate the relief of relentless apprehension and functional impairment for several patients simultaneously. Although there are many details left to explore regarding the use of GCBT for PTSD, the therapy’s foundation for use as a PTSD treatment is apparent.

Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Anxiety is a necessary and natural reaction to trauma, but, sometimes, anxiety symptoms become excessive and problematic, as experienced with posttraumatic stress disorder (PTSD). Some patients who struggle with PTSD endure a relentless apprehension so intense that it keeps them from participating in everyday activities, such as attending work and partaking in social activities. Associated anxiety symptoms severely impair everyday function and include increased heart rate, sweating, intrusive images, poor attention, fear, or insomnia. Posttraumatic stress disorder symptoms often lead to occupational dysfunction, relationship difficulty, and numerous other functional impairments.

Approximately 300,000 veterans meet the criteria for PTSD related to ongoing or recent wars.¹ The veteran does not bear the personal and functional burden alone; however, the financial load is felt throughout society. One recent study suggests that for veterans diagnosed with PTSD, the first 2 years after deployment cost society an estimated $7,000 per individial.² Current research suggests that this potentially debilitating disorder occurs in about 14% of Operation Iraqi Freedom/Operation Enduring Freedom combat troops, whereas the similar U.S. demographic population experiences PTSD at a rate of about 7%.^1,3 The ongoing military trauma exposures are compelling the mental health community to establish efficient and effective treatment options.^4,5

Several treatment strategies exist to reduce PTSD symptoms, but health care professionals must seek a balance between therapeutic benefit and cost. The treatment of PTSD is diverse and variable; however, in the most recent Clinical Practice Guideline (CPG) for PTSD, the VA and DoD specifically endorse some psychotherapeutic interventions while dissuading the use of others.⁶ Of note, the VA and DoD CPG strongly encourages Stress Inoculation Training (SIT) and similar cognitive therapies aimed at guiding patients through the process of consciously understanding the relationship between thoughts and feelings and then modifying thoughts to appropriately manage stressors.⁶ Meanwhile, group psychotherapy has been determined to be “somewhat helpful.”⁶ Even though cognitive- and group-based therapies have long been established as efficacious for numerous psychological disorders (depression, obsessive compulsive disorder, eating disorders, etc), neither the American Group Psychotherapy Association nor the VA and DoD CPG directly endorse the use of group cognitive behavioral therapy (GCBT) for the treatment of PTSD.^6,7 However, both VA and DoD mental health providers commonly practice CBT and various group psychotherapies for the treatment of PTSD.

Despite the widespread use of CBT, there is a gap in the clinical understanding of the evidence supporting GCBT for PTSD. The goal of this synthesis was to understand the efficacy of treating PTSD symptoms with group psychotherapy. To begin this investigation, the following PICO (population, intervention, comparison, outcome) question was asked: In adults diagnosed with PTSD, how effective is group cognitive behavioral therapy in reducing PTSD-related symptoms?

Methods

Research articles addressing the use of GCBT in PTSD were obtained via database searches that took place during October 2012 (Table). Searched databases included the Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews Randomized Controlled Trials, Psychological Information (PsycINFO), and Public Medicine (PubMed).

The PubMed database was searched using the following MeSH (medical subject heading) terms: “psychotherapy, group” and “stress disorders, post-traumatic” and “cognitive therapy.” Limitations were set to include only patients aged ≥ 18 years, results in English, those involving human subjects, and articles published within the past 5 years. A manual search of references was also conducted, and relevant articles were retained.

Articles that addressed primary substance abuse, other DSM Axis I disorders, intimate partner violence, or family issues were excluded from the evidence sample due to concerns of an alternate treatment focus. Articles with a focus on telehealth or alternative medicine were considered confounding to the scope of this review were also excluded. It was also noted that the term CBT is used collectively for an umbrella of treatments; however, treatments that focused on elements other than the components of CBT being delivered in a group were not included. To prevent duplication of the results, research from an inclusive review was not considered individually.

SUMMARY OF EVIDENCE

Six works fulfilled the PICO criteria and were of sufficient quality to be synthesized. Of the 6 articles retained for synthesis, 2 were high-level reviews. Both reviews supported the use of GCBT for PTSD treatment. Barrera and colleagues reported an overall large effect size regardless of the presence of exposure in-group among the 12 treatment conditions and 651 study participants.⁸ These researchers also reported that in-group exposure did not further traumatize other group members.

Similarly, although a notably older and smaller review, Bisson and Andrew reported a significant standard mean deviation between 4 GCBT treatment and wait list controls. These reviewers did not find a significant difference between trauma- and nontrauma-focused treatment groups. The reviews also noted that individual psychotherapy and/or pharmacotherapy was most often continued throughout the reviewed studies.^8,9

The 4 other studies contribute substantively to this synthesis but arguably represent lower evidence quality. A large longitudinal study of 496 Australian veterans reported a large effect size that was sustained 9 months after treatment began.¹⁰ These researchers used an intensive outpatient program that included medication and other treatment modalities as the basis for GCBT delivery. They reported that the majority of the patients revealed improvement in PTSD symptoms.

Another study sampled a similar group of 10 combat veterans but focused particular attention on sleep-related PTSD symptoms of insomnia, nightmares, and sleep quality.¹¹ Although these researchers were unable to report a significant difference in overall PTSD symptoms for the 8 subjects who completed the protocol, they did find a large effect size on insomnia severity and a medium effect size on sleep quality. Regular treatment, including medication, continued throughout this study.

Other researchers reported a medium effect size on PTSD symptoms while using GCBT in a heterogeneous group with various anxiety disorders, including obsessive compulsive disorder, generalized anxiety disorder, social phobia, panic disorders, and PTSD.¹² Although reporting similar results as all other included studies, this study has some significant limitations, including a 26% dropout rate among the 152 participants. The final study included for synthesis reported a remarkable 67% elimination of the PTSD diagnosis among 6 motor vehicle accident survivors in the small, uncontrolled study.¹³ Concomitant treatments, including medications, were not reported in detail for these 4 studies except as mentioned.

As a whole, the 6 studies revealed some appreciable commonalities. Time since diagnosis did not seem to influence the results. Attrition was consistently found to be similar to other PTSD treatments. The reported session topics were loosely based on common CBT tenets (ie, education, challenging cognitions, and relaxation techniques) and were typically similar among treatment groups, including the use of homework.

DISCUSSION

As the diagnosis of PTSD increases to unfamiliar levels, GCBT has the potential to be helpful to clinicians and patients seeking alternatives to their current treatments.^1,4,14 The reported results imply that GCBT can be useful in PTSD symptom reduction. This could be particularly useful to VA and military providers or rural providers operating with limited resources.

Treatment protocols are not well established and should be approached with care prior to the establishment of CBT treatment groups for those diagnosed with PTSD. Session overviews and descriptions, such as those mentioned in Thompson and colleagues, could provide a reference point for future use.¹³

Also worth considering, CBT can be an ambiguous term requiring deliberate definition within treatment protocols. As noted in the VA and DoD CPG, exposure- and trauma-focused treatment designs can be efficacious, but these elements do not seem to be required within the GCBT treatment setting.

The current research also suggests GCBT efficacy regardless of the index trauma. This does not suggest that heterogeneous groups were frequently studied nor can conclusions be drawn regarding heterogeneous treatment groups. Elements such as group size and session length are inconsistently reported and require specific consideration as well. There is a distinct lack of research directly comparing individual CBT with GCBT directly, which prohibits meaningful conclusions regarding PTSD symptom reduction. This research gap may well have influenced the recommendations within the VA and DoD CPG. Although some higher quality studies exist, many of the published reports on GCBT have noteworthy design flaw, such as inadequate controls and statistical analysis.

LIMITATIONS

There are some limitations to this literature synthesis. Although the search was limited to the past 5 years, the inclusion of reviews accounts for older evidence. As alluded to earlier, the lack of a standardized GCBT treatment protocol challenges results comparisons as well. The consequent treatment variations make direct interstudy comparison and synthesis difficult. Similarly, outcome measures varied between studies. Also, group psychotherapy is well established and accepted. Therefore, much of the supporting research was accomplished outside the parameters of this literature search. This empirical view of group psychotherapy among mental health providers may also contribute to the lack of available research.

It is also worth noting that studies finding neutral or negative results are often unpublished. This publication bias could account for the lack of available evidence. The research reports do not consistently report therapist qualifications; however, board certificates in group psychotherapy and CBT are undeniably variables available for debate. The inclusion of uncontrolled trials limits these findings as well. Although the above limitations are not exhaustive, they do provide necessary caveats to future generalizations.

FUTURE IMPLICATIONS

Perhaps the most important information to gain from future research is that of treatment outcomes. Studies that include a detailed outcome evaluation could reveal patient satisfaction, efficacy, and financial considerations. In the presence of adequate supportive data, GCBT could contribute outcome data regarding trauma survivor symptom normalization, peer support formation, access to care, treatment efficiency, and health care resources utilization. As noted in Barrera and colleagues, future analysis will require a greater volume of trials with an overall increase in methodological rigor.⁸

Current research has demonstrated a solid base from which to spawn specific treatment protocols. The available research is investigational in terms of treatment procedures. Replication of these studies could dictate treatment protocol and contribute substantively to future VA and DoD CPG updates. Future researchers should consider the use of a standard PTSD symptom assessment tool to make interstudy comparisons more meaningful. The length of treatment and exposure elements should be targeted specifically in future research as these components currently vary the most.

The military represents an obvious avenue for future research due to increased PTSD diagnosis in recent years. Although the etiology of the increase in PTSD is unclear and most likely multifactorial (decreased resilience, increased awareness, increased pursuit of secondary gains, etc), the need for treatment options is apparent.¹ Group cohesion has been shown to be a core component of successful group psychotherapy, so military members who are accustomed to unit cohesion might represent a uniquely suitable population for this modality.¹⁵ Interestingly and for reasons not currently understood, veterans do not see effects of therapy as large as their civilian counterparts.⁸ This underscores the need for further evaluation of military-specific outcomes.

CONCLUSIONS

Although the available evidence is not robust, results do support the careful use of GCBT as an effective treatment for PTSD symptom reduction.⁸ Group psychotherapy has been generally regarded as an efficacious and cost-effective method to achieve similar outcomes to individual therapy. Increasing PTSD prevalence compels mental health care providers to explore all available treatment options. The potential for GCBT as an option is exciting, especially for mental health providers and those with limited resources. Rising health care standards and the current national fiscal situation is dictating a reevaluation of treatment options; so perhaps all health care providers will soon consider the use of GCBT.

As with any group assignment, the clinician should carefully consider the individual’s suitability and desire for group participation.¹⁶ With GCBT, providers could facilitate the relief of relentless apprehension and functional impairment for several patients simultaneously. Although there are many details left to explore regarding the use of GCBT for PTSD, the therapy’s foundation for use as a PTSD treatment is apparent.

Author disclosures
The author reports no actual or potential conflicts of interest with regard to this article.

Disclaimer
The opinions expressed herein are those of the author and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

ABSTRACT

Purpose This study sought to identify the needs and unmet needs of the growing number of adult cancer survivors.


Methods Vermont survivor advocates partnered with academic researchers to create a survivor registry and conduct a cross-sectional survey of cancer-related needs and unmet needs of adult survivors. The mailed survey addressed 53 specific needs in 5 domains based on prior research, contributions from the research partners, and pilot testing. Results were summarized by computing proportions who reported having needs met or unmet.

Results Survey participants included 1668 of 2005 individuals invited from the survivor registry (83%); 65.7% were ages 60 or older and 61.9% were women. These participants had received their diagnosis 2 to 16 years earlier; 77.5% had been diagnosed ≥5 years previously; 30.2% had at least one unmet need in the emotional, social, and spiritual (e) domain; just 14.4% had at least one unmet need in the economic and legal domain. The most commonly identified individual unmet needs were in the e and the information (i) domains and included “help reducing stress” (14.8% of all respondents) and “information about possible after effects of treatment” (14.4%).

Conclusions Most needs of these longer-term survivors were met, but substantial proportions of survivors identified unmet needs. Unmet needs such as information about late and long-term adverse effects of treatment could be met within clinical care with a cancer survivor care plan, but some survivors may require referral to services focused on stress and coping.

Following a successful course of treatment for cancer, many patients return to or remain in the care of their primary care physician (PCP). What often goes unrecognized, however, are these cancer survivors’ unique needs—physical, psychological, social, spiritual, economic, and legal—and the informational and professional services available to address them.^1,2

Increased cancer survival creates new needs. There are already >12 million cancer survivors in the United States and >30 million worldwide.³ As baby boomers age, the number of cancers diagnosed over the next 45 years will double⁴ and improved diagnosis and treatments are already prolonging survivors’ lives. With the greater number of cancer survivors and longer survival time, a cancer survivorship advocacy community has developed to help identify and address the concerns, needs, and benefits of having lived with, through, and beyond a cancer diagnosis.

The purpose of our study. Some of these areas of need have been studied extensively with childhood survivors, breast cancer survivors, and, more recently, prostate cancer survivors. However, few studies have examined adult survivors from all cancer types^5-9 or have had cohorts large enough to yield meaningful information.^5,7-9 The aim of this study was to describe the needs of adult survivors of all cancer types in a general population from Vermont and to determine whether these needs were met. The results of this study can help identify the services needed by cancer survivors.

METHODS

Population and sample

After effects
 of treatment, a big concern for most patients, 
is important to address not only at the outset 
of treatment but also at its conclusion
 and with documentation in a survivor care plan. In November 2009, we invited all survivors listed in a cancer survivor registry to complete a 12-page survey. The registry¹⁰ was created as part of the Cancer Survivor Community Study, a community-based participatory research project funded by the National Cancer Institute. The study’s Steering Committee was comprised of cancer survivors, cancer registrars, and researchers. We identified and invited cancer survivors from 4 hospital registries in northwest and central Vermont to participate. Registry participants who indicated willingness to enroll in research studies received an invitation letter and informed consent form, the 12-page survey, and an addressed and stamped return envelope. We obtained Institutional Review Board (IRB) approval for these procedures at the University of Vermont and at local hospital IRBs.

Instrument development

A working group from the Steering Committee reviewed a range of available instruments to assess cancer survivors’ needs.^9,11-15 We determined that the survey most relevant to our objectives was the Cancer Survivors’ Unmet Needs (CaSun) instrument.¹³ Because CaSun was developed in Australia, we carefully examined each question for appropriateness to our target audience. We eliminated several questions that we thought less important, added questions from other instruments, and simplified the survey format. Survivors from the Steering Committee pilot tested the draft questionnaire to identify awkward wording or concepts.

We piloted the revised draft using a standardized feedback form with cancer survivors who were not connected to our project and not enrolled in the survivor registry, and with residents at a senior center. Students and a teacher from an Adult Basic Education program helped to ensure easy readability. Our final instrument had 53 questions about needs in 5 domains. Questions within each domain completed the lead-in, “Since your cancer diagnosis, did you need....” We asked participants to check only 1 of the 3 boxes to the right of each question to indicate that there was no need in that area, that there was a need and it was met, or that there was a need and it was not met. We obtained self-reported demographic data during enrollment in the registry.

Data analysis

We summarized data by computing the percent of survivors who reported having each need (either met or unmet) and the percent for whom the need was unmet. The latter was computed both as a percent of all survivors and as a percent of those who had the need. We also calculated the percentage of survivors that had at least one need and at least one unmet need in each domain, as well as the average number of needs per survivor in each domain. We used SPSS for Unix, Release 6.1 (AIX 3.2)(IBM, Armonk, New York).

RESULTS

Of the 2005 cancer survivors invited into the study, 1668 responded, yielding a participation rate of 83%. TABLE 1 describes the self-reported demographic and cancer characteristics of participants in this study. Most respondents were female, ≥60 years old, urban dwellers, married or with a partner, well educated, and had household incomes of ≥$50,000. There were more breast cancer survivors than survivors of other cancers, and 14.6% of all survivors reported being diagnosed with more than one cancer. Cancer was diagnosed at stages 1 or 2 for 78.3% of the participants; 61.9% reported having undergone ≥2 treatment regimens.

The survey addressed needs in 5 domains: access to care and services (A); information (I); emotional, social, and spiritual (E); physical (P); and economic and legal (L). More than 80% of respondents reported having at least one need in the A, I, and E domains. The E domain had the most survivors with at least one unmet need (N=503), followed by the I (N=410) and P (N=375) domains.

Identifying unmet needs. TABLE 2 shows results for the specific questions within the domains in the order they were asked. Most participants who had a need also had it met. However, some needs that were not commonly reported were deemed unmet by a large proportion of those who expressed the need. For example, the A need for “A case manager to whom you could go to find out about services whenever they were needed” (A5) was reported by only 29.1% of survivors. But 32.1% of those reporting the need said it was unmet, which corresponds to 9.4% of all study participants having the need unmet. Similarly, the need for “More information about complementary and alternative medicine” (I3) was reported by about a quarter of the study population, 41.4% of whom (9.8% of all participants) reported it as unmet. In the P domain, the need for “Help to address problems with your sex life” (P4) was reported by only 26.5% of the respondents; yet 40.7% of those reporting the need had it unmet. Similarly, in the L domain, “Help with life insurance concerns as a result of your cancer” (L3) was only reported by 10.9% of the participants but was unmet for 46.4% of those who reported the need, or 5% of all study participants.

Most commonly expressed needs. TABLE 2 also identifies 12 needs reported by ≥50% of participants. Three of these needs were in the A domain, 6 in the I domain, and 3 in the E domain. The 2 most common needs related to A: the need “To feel like you were managing your health together with the medical team” (A3) was reported by 68.6% and was viewed as unmet by 5.2% of all respondents; the need for “Access to screening for recurrence or other cancers” (A7) was reported by 63.8% of the survivors but was deemed unmet by only 3.1% of all the respondents. “More information about possible after effects of your treatment” (I5) was a need for 63.2% that went unmet in 22.9% (14.4% of all participants). “Help managing your concerns about the cancer coming back” (E13) was reported as a need by 54.1% and as unmet by 11.8% of all participants.

The rank order of 7 unmet needs reported by ≥10% of the participants is shown in TABLE 3. Four of the 7 unmet needs were in the E domain. The most common unmet need in this domain was “Help reducing stress in your life” (E19).

Only 3 needs were both commonly reported and also unmet for at least 10% of the participants: “More information about possible after effects of your treatment” (I5), “More information about possible side effects of your treatment” (I4), and “Help managing your concerns about the cancer coming back” (E13).

DISCUSSION

Concern about cancer recurrence is 
a prominent patient need that might be addressed most adequately in the course of usual primary care. The survey instrument we used to assess the needs of cancer survivors in a large community-based registry included a detailed list of potential needs generated, in part, by representatives of the survivor community. Most cancer survivor needs mentioned in this survey were met. However, some needs were not met for substantial proportions of respondents and should be examined carefully to determine whether services could be improved to better address them. This study was planned and implemented by researchers and cancer survivors using community-based participatory principles to learn about local needs. The results of this study may be generalizable to similar populations of survivors and will inform the survivorship goals for the Vermont State Cancer Plan and future Vermont Cancer Survivor Network activities.

Acting on patients’ expressed needs. Over 80% of participants had needs in the A, I, and E domains. The most commonly reported need was in the A domain, “To feel like you were managing your health together with the medical team” (A3). It was also a top need in other studies that asked this question.^16,17 A cancer diagnosis may cause patients to feel out of control. Participation in the management of their health may help them gain a greater sense of control. PCP accommodation of expressed patient preferences may be an important part of a cancer survivor’s long-term adaptation to the disease.

Six of the 12 most frequently reported needs and 2 frequently reported unmet needs were in the I domain. Communication of information increases patients’ involvement in decision-making and enables them to cope better during diagnosis, treatment, and follow-up.¹⁸ “More information about possible after effects of your treatment” and “More information about possible side effects of your treatment” were reported by a high proportion of participants, and many also reported these needs as unmet. In another study about health-related information needs of survivors, 52% wanted more information about “What late and long-term side effects of cancer treatment are expected”¹⁹; and in a 2005 review of information needs, 12% of survivors reported similar needs.²⁰ Two recent articles also noted such needs in adolescent and young adult cancer survivors.^21,22 Based on current evidence, it would be advisable to discuss anticipated effects of treatment with patients not only at the outset but also at the end of treatment, and to write it in a cancer survivor care plan.

Individual needs that were not met for at least 10% of respondents, regardless of how common the need (TABLE 3), provided additional insights. Among these 7 needs, 3 also were reported as a need by more than 50% of respondents (TABLE 2), and 4 by <50%, indicating that some less common needs are not being met adequately. Among these 7 prominent unmet needs, 4 were E Issues (TABLE 3) and 2 were I Issues.

Because of the wide range of patients that primary care physicians serve, they might be better prepared to help cancer patients address problems with their sex lives. Unmet needs are an opportunity to improve care. In our study and in others, E needs were most likely to be unmet.^17,23-26 Among the 4 common unmet E needs, 2 (E19 and E11) focused on generalized stress and worry, and one (E15) focused on concern about illness impact on family members or partners. Although these issues may be challenging to address successfully in a typical clinical environment, others have confirmed the importance of these needs and proposed ways to meet them.²⁷ The fourth most common unmet E need focused on concern about cancer recurrence, also a prominent need found in other studies.^15-17 These needs might be addressed more adequately in the course of usual clinical care by PCPs or specialists. In fact, the American College of Surgeons’ Commission on Cancer 2012 standards now require psychosocial distress screening and the provision of referral for psychosocial services.²⁴ Our results are consistent in many respects with prior studies of needs reported by cancer survivors in other countries. The CaSUN survey developed by Hodgkinson et al¹³ has been applied to several survivor populations in Australia. In a diverse survivor sample, specific E, I, and A issues were frequently reported as unmet needs.¹³ The most prominent unmet needs in a gynecologic cancer sample using CaSUN focused on emotional and social issues such as worry, stress, coping, and relationships with, and expectations of, others.²⁵

Barg et al²³ conducted a survey of unmet needs in the United States using a detailed list based on prior survivor research and targeting individuals in a cancer registry. The most prominent area of need expressed was “emotional,” similar to the high rank of E needs in our study. In contrast to our study, however, physical and financial issues also were prominent. The latter variances might be explained by differences in access to care, or perhaps the study’s low response rate (23.8%). A similar survey reported by Campbell et al¹² identified needs in the emotional domain as the most cited unmet survivor needs based on psychometrically developed subscales of a 152-item survey (29% response rate).

These results from several studies, including ours, call for more detailed exploration of the E needs of long-term cancer survivors. A useful framework developed by Stein et al²⁸ accounts for factors contributing to cancer stress and burden as well as resources available to survivors (intrapersonal, social, informational, and tangible services), with the interactions between these 2 domains determining how well a survivor will be able to cope. There clearly is a role for development of more effective communication channels and focused services to meet survivor needs.

The list of most common unmet needs in TABLE 3 also includes a focus on “problems with your sex life” (P4). This is an area that may be difficult to address in a cancer care setting because of the focus on disease management. Primary care providers might be better prepared to address this issue because they likely encounter similar issues among the wide range of patients they serve. However, a recent study reported that only 46% of internists were somewhat or likely to initiate a discussion about sexuality with cancer survivors.²⁹ Some additional preparation for physicians to address this need might be warranted.

The proportion in this sample reporting needs for access to, or information about, complementary and alternative medicine services fell below the thresholds chosen to designate common needs in this study. Although reported use is relatively common among cancer survivor in several studies,^30-32 it appears that in our survivor sample, those who were interested in these approaches encountered only moderate barriers.

Study limitations. We invited participants from a registry unlikely to include cancer survivors with lower educational attainment or from rural locations⁹—that is, our participants were less likely to have challenges in obtaining appropriate services and information. This sample limitation therefore likely underestimates the overall level of needs among cancer survivors.

This was a cross-sectional assessment of perceived needs among a diverse group of survivors, which may have overlooked needs that were met but only after considerable effort on the part of survivors. Longitudinal studies would provide more complete accounts of how readily needs are met and the changes in needs at different times in the continuum of care.

The Vermont population is less diverse racially and ethnically, but not with respect to household income or educational attainment, than the overall US population. Access to health care also is relatively high in Vermont compared with many other states. According to a 2009 Vermont Household Health Insurance Survey, only 7.6% of Vermonters are uninsured.³³

CORRESPONDENCE
Berta Geller, EdD, University of Vermont, Health Promotion Research/Family Medicine, 1 South Prospect Street, Burlington, VT 05401-3444; berta.geller@uvm.edu

ACKNOWLEDGEMENTS
We would like to thank Anne Dorwaldt, Kathy Howe, Mark Bowman and John Mace at the University of Vermont, and the Cancer Survivor Community Study Steering Committee for their contributions to the successful completion of this study. We also thank the cancer survivors who participated in the pilot testing and the overall survey.

ABSTRACT

Purpose This study sought to identify the needs and unmet needs of the growing number of adult cancer survivors.


Methods Vermont survivor advocates partnered with academic researchers to create a survivor registry and conduct a cross-sectional survey of cancer-related needs and unmet needs of adult survivors. The mailed survey addressed 53 specific needs in 5 domains based on prior research, contributions from the research partners, and pilot testing. Results were summarized by computing proportions who reported having needs met or unmet.

Results Survey participants included 1668 of 2005 individuals invited from the survivor registry (83%); 65.7% were ages 60 or older and 61.9% were women. These participants had received their diagnosis 2 to 16 years earlier; 77.5% had been diagnosed ≥5 years previously; 30.2% had at least one unmet need in the emotional, social, and spiritual (e) domain; just 14.4% had at least one unmet need in the economic and legal domain. The most commonly identified individual unmet needs were in the e and the information (i) domains and included “help reducing stress” (14.8% of all respondents) and “information about possible after effects of treatment” (14.4%).

Conclusions Most needs of these longer-term survivors were met, but substantial proportions of survivors identified unmet needs. Unmet needs such as information about late and long-term adverse effects of treatment could be met within clinical care with a cancer survivor care plan, but some survivors may require referral to services focused on stress and coping.

Following a successful course of treatment for cancer, many patients return to or remain in the care of their primary care physician (PCP). What often goes unrecognized, however, are these cancer survivors’ unique needs—physical, psychological, social, spiritual, economic, and legal—and the informational and professional services available to address them.^1,2

Increased cancer survival creates new needs. There are already >12 million cancer survivors in the United States and >30 million worldwide.³ As baby boomers age, the number of cancers diagnosed over the next 45 years will double⁴ and improved diagnosis and treatments are already prolonging survivors’ lives. With the greater number of cancer survivors and longer survival time, a cancer survivorship advocacy community has developed to help identify and address the concerns, needs, and benefits of having lived with, through, and beyond a cancer diagnosis.

The purpose of our study. Some of these areas of need have been studied extensively with childhood survivors, breast cancer survivors, and, more recently, prostate cancer survivors. However, few studies have examined adult survivors from all cancer types^5-9 or have had cohorts large enough to yield meaningful information.^5,7-9 The aim of this study was to describe the needs of adult survivors of all cancer types in a general population from Vermont and to determine whether these needs were met. The results of this study can help identify the services needed by cancer survivors.

METHODS

Population and sample

After effects
 of treatment, a big concern for most patients, 
is important to address not only at the outset 
of treatment but also at its conclusion
 and with documentation in a survivor care plan. In November 2009, we invited all survivors listed in a cancer survivor registry to complete a 12-page survey. The registry¹⁰ was created as part of the Cancer Survivor Community Study, a community-based participatory research project funded by the National Cancer Institute. The study’s Steering Committee was comprised of cancer survivors, cancer registrars, and researchers. We identified and invited cancer survivors from 4 hospital registries in northwest and central Vermont to participate. Registry participants who indicated willingness to enroll in research studies received an invitation letter and informed consent form, the 12-page survey, and an addressed and stamped return envelope. We obtained Institutional Review Board (IRB) approval for these procedures at the University of Vermont and at local hospital IRBs.

Instrument development

A working group from the Steering Committee reviewed a range of available instruments to assess cancer survivors’ needs.^9,11-15 We determined that the survey most relevant to our objectives was the Cancer Survivors’ Unmet Needs (CaSun) instrument.¹³ Because CaSun was developed in Australia, we carefully examined each question for appropriateness to our target audience. We eliminated several questions that we thought less important, added questions from other instruments, and simplified the survey format. Survivors from the Steering Committee pilot tested the draft questionnaire to identify awkward wording or concepts.

We piloted the revised draft using a standardized feedback form with cancer survivors who were not connected to our project and not enrolled in the survivor registry, and with residents at a senior center. Students and a teacher from an Adult Basic Education program helped to ensure easy readability. Our final instrument had 53 questions about needs in 5 domains. Questions within each domain completed the lead-in, “Since your cancer diagnosis, did you need....” We asked participants to check only 1 of the 3 boxes to the right of each question to indicate that there was no need in that area, that there was a need and it was met, or that there was a need and it was not met. We obtained self-reported demographic data during enrollment in the registry.

Data analysis

We summarized data by computing the percent of survivors who reported having each need (either met or unmet) and the percent for whom the need was unmet. The latter was computed both as a percent of all survivors and as a percent of those who had the need. We also calculated the percentage of survivors that had at least one need and at least one unmet need in each domain, as well as the average number of needs per survivor in each domain. We used SPSS for Unix, Release 6.1 (AIX 3.2)(IBM, Armonk, New York).

RESULTS

Of the 2005 cancer survivors invited into the study, 1668 responded, yielding a participation rate of 83%. TABLE 1 describes the self-reported demographic and cancer characteristics of participants in this study. Most respondents were female, ≥60 years old, urban dwellers, married or with a partner, well educated, and had household incomes of ≥$50,000. There were more breast cancer survivors than survivors of other cancers, and 14.6% of all survivors reported being diagnosed with more than one cancer. Cancer was diagnosed at stages 1 or 2 for 78.3% of the participants; 61.9% reported having undergone ≥2 treatment regimens.

The survey addressed needs in 5 domains: access to care and services (A); information (I); emotional, social, and spiritual (E); physical (P); and economic and legal (L). More than 80% of respondents reported having at least one need in the A, I, and E domains. The E domain had the most survivors with at least one unmet need (N=503), followed by the I (N=410) and P (N=375) domains.

Identifying unmet needs. TABLE 2 shows results for the specific questions within the domains in the order they were asked. Most participants who had a need also had it met. However, some needs that were not commonly reported were deemed unmet by a large proportion of those who expressed the need. For example, the A need for “A case manager to whom you could go to find out about services whenever they were needed” (A5) was reported by only 29.1% of survivors. But 32.1% of those reporting the need said it was unmet, which corresponds to 9.4% of all study participants having the need unmet. Similarly, the need for “More information about complementary and alternative medicine” (I3) was reported by about a quarter of the study population, 41.4% of whom (9.8% of all participants) reported it as unmet. In the P domain, the need for “Help to address problems with your sex life” (P4) was reported by only 26.5% of the respondents; yet 40.7% of those reporting the need had it unmet. Similarly, in the L domain, “Help with life insurance concerns as a result of your cancer” (L3) was only reported by 10.9% of the participants but was unmet for 46.4% of those who reported the need, or 5% of all study participants.

Most commonly expressed needs. TABLE 2 also identifies 12 needs reported by ≥50% of participants. Three of these needs were in the A domain, 6 in the I domain, and 3 in the E domain. The 2 most common needs related to A: the need “To feel like you were managing your health together with the medical team” (A3) was reported by 68.6% and was viewed as unmet by 5.2% of all respondents; the need for “Access to screening for recurrence or other cancers” (A7) was reported by 63.8% of the survivors but was deemed unmet by only 3.1% of all the respondents. “More information about possible after effects of your treatment” (I5) was a need for 63.2% that went unmet in 22.9% (14.4% of all participants). “Help managing your concerns about the cancer coming back” (E13) was reported as a need by 54.1% and as unmet by 11.8% of all participants.

The rank order of 7 unmet needs reported by ≥10% of the participants is shown in TABLE 3. Four of the 7 unmet needs were in the E domain. The most common unmet need in this domain was “Help reducing stress in your life” (E19).

Only 3 needs were both commonly reported and also unmet for at least 10% of the participants: “More information about possible after effects of your treatment” (I5), “More information about possible side effects of your treatment” (I4), and “Help managing your concerns about the cancer coming back” (E13).

DISCUSSION

Concern about cancer recurrence is 
a prominent patient need that might be addressed most adequately in the course of usual primary care. The survey instrument we used to assess the needs of cancer survivors in a large community-based registry included a detailed list of potential needs generated, in part, by representatives of the survivor community. Most cancer survivor needs mentioned in this survey were met. However, some needs were not met for substantial proportions of respondents and should be examined carefully to determine whether services could be improved to better address them. This study was planned and implemented by researchers and cancer survivors using community-based participatory principles to learn about local needs. The results of this study may be generalizable to similar populations of survivors and will inform the survivorship goals for the Vermont State Cancer Plan and future Vermont Cancer Survivor Network activities.

Acting on patients’ expressed needs. Over 80% of participants had needs in the A, I, and E domains. The most commonly reported need was in the A domain, “To feel like you were managing your health together with the medical team” (A3). It was also a top need in other studies that asked this question.^16,17 A cancer diagnosis may cause patients to feel out of control. Participation in the management of their health may help them gain a greater sense of control. PCP accommodation of expressed patient preferences may be an important part of a cancer survivor’s long-term adaptation to the disease.

Six of the 12 most frequently reported needs and 2 frequently reported unmet needs were in the I domain. Communication of information increases patients’ involvement in decision-making and enables them to cope better during diagnosis, treatment, and follow-up.¹⁸ “More information about possible after effects of your treatment” and “More information about possible side effects of your treatment” were reported by a high proportion of participants, and many also reported these needs as unmet. In another study about health-related information needs of survivors, 52% wanted more information about “What late and long-term side effects of cancer treatment are expected”¹⁹; and in a 2005 review of information needs, 12% of survivors reported similar needs.²⁰ Two recent articles also noted such needs in adolescent and young adult cancer survivors.^21,22 Based on current evidence, it would be advisable to discuss anticipated effects of treatment with patients not only at the outset but also at the end of treatment, and to write it in a cancer survivor care plan.

Individual needs that were not met for at least 10% of respondents, regardless of how common the need (TABLE 3), provided additional insights. Among these 7 needs, 3 also were reported as a need by more than 50% of respondents (TABLE 2), and 4 by <50%, indicating that some less common needs are not being met adequately. Among these 7 prominent unmet needs, 4 were E Issues (TABLE 3) and 2 were I Issues.

Because of the wide range of patients that primary care physicians serve, they might be better prepared to help cancer patients address problems with their sex lives. Unmet needs are an opportunity to improve care. In our study and in others, E needs were most likely to be unmet.^17,23-26 Among the 4 common unmet E needs, 2 (E19 and E11) focused on generalized stress and worry, and one (E15) focused on concern about illness impact on family members or partners. Although these issues may be challenging to address successfully in a typical clinical environment, others have confirmed the importance of these needs and proposed ways to meet them.²⁷ The fourth most common unmet E need focused on concern about cancer recurrence, also a prominent need found in other studies.^15-17 These needs might be addressed more adequately in the course of usual clinical care by PCPs or specialists. In fact, the American College of Surgeons’ Commission on Cancer 2012 standards now require psychosocial distress screening and the provision of referral for psychosocial services.²⁴ Our results are consistent in many respects with prior studies of needs reported by cancer survivors in other countries. The CaSUN survey developed by Hodgkinson et al¹³ has been applied to several survivor populations in Australia. In a diverse survivor sample, specific E, I, and A issues were frequently reported as unmet needs.¹³ The most prominent unmet needs in a gynecologic cancer sample using CaSUN focused on emotional and social issues such as worry, stress, coping, and relationships with, and expectations of, others.²⁵

Barg et al²³ conducted a survey of unmet needs in the United States using a detailed list based on prior survivor research and targeting individuals in a cancer registry. The most prominent area of need expressed was “emotional,” similar to the high rank of E needs in our study. In contrast to our study, however, physical and financial issues also were prominent. The latter variances might be explained by differences in access to care, or perhaps the study’s low response rate (23.8%). A similar survey reported by Campbell et al¹² identified needs in the emotional domain as the most cited unmet survivor needs based on psychometrically developed subscales of a 152-item survey (29% response rate).

These results from several studies, including ours, call for more detailed exploration of the E needs of long-term cancer survivors. A useful framework developed by Stein et al²⁸ accounts for factors contributing to cancer stress and burden as well as resources available to survivors (intrapersonal, social, informational, and tangible services), with the interactions between these 2 domains determining how well a survivor will be able to cope. There clearly is a role for development of more effective communication channels and focused services to meet survivor needs.

The list of most common unmet needs in TABLE 3 also includes a focus on “problems with your sex life” (P4). This is an area that may be difficult to address in a cancer care setting because of the focus on disease management. Primary care providers might be better prepared to address this issue because they likely encounter similar issues among the wide range of patients they serve. However, a recent study reported that only 46% of internists were somewhat or likely to initiate a discussion about sexuality with cancer survivors.²⁹ Some additional preparation for physicians to address this need might be warranted.

The proportion in this sample reporting needs for access to, or information about, complementary and alternative medicine services fell below the thresholds chosen to designate common needs in this study. Although reported use is relatively common among cancer survivor in several studies,^30-32 it appears that in our survivor sample, those who were interested in these approaches encountered only moderate barriers.

Study limitations. We invited participants from a registry unlikely to include cancer survivors with lower educational attainment or from rural locations⁹—that is, our participants were less likely to have challenges in obtaining appropriate services and information. This sample limitation therefore likely underestimates the overall level of needs among cancer survivors.

This was a cross-sectional assessment of perceived needs among a diverse group of survivors, which may have overlooked needs that were met but only after considerable effort on the part of survivors. Longitudinal studies would provide more complete accounts of how readily needs are met and the changes in needs at different times in the continuum of care.

The Vermont population is less diverse racially and ethnically, but not with respect to household income or educational attainment, than the overall US population. Access to health care also is relatively high in Vermont compared with many other states. According to a 2009 Vermont Household Health Insurance Survey, only 7.6% of Vermonters are uninsured.³³

CORRESPONDENCE
Berta Geller, EdD, University of Vermont, Health Promotion Research/Family Medicine, 1 South Prospect Street, Burlington, VT 05401-3444; berta.geller@uvm.edu

ACKNOWLEDGEMENTS
We would like to thank Anne Dorwaldt, Kathy Howe, Mark Bowman and John Mace at the University of Vermont, and the Cancer Survivor Community Study Steering Committee for their contributions to the successful completion of this study. We also thank the cancer survivors who participated in the pilot testing and the overall survey.

ABSTRACT

Purpose This study sought to identify the needs and unmet needs of the growing number of adult cancer survivors.


Methods Vermont survivor advocates partnered with academic researchers to create a survivor registry and conduct a cross-sectional survey of cancer-related needs and unmet needs of adult survivors. The mailed survey addressed 53 specific needs in 5 domains based on prior research, contributions from the research partners, and pilot testing. Results were summarized by computing proportions who reported having needs met or unmet.

Results Survey participants included 1668 of 2005 individuals invited from the survivor registry (83%); 65.7% were ages 60 or older and 61.9% were women. These participants had received their diagnosis 2 to 16 years earlier; 77.5% had been diagnosed ≥5 years previously; 30.2% had at least one unmet need in the emotional, social, and spiritual (e) domain; just 14.4% had at least one unmet need in the economic and legal domain. The most commonly identified individual unmet needs were in the e and the information (i) domains and included “help reducing stress” (14.8% of all respondents) and “information about possible after effects of treatment” (14.4%).

Conclusions Most needs of these longer-term survivors were met, but substantial proportions of survivors identified unmet needs. Unmet needs such as information about late and long-term adverse effects of treatment could be met within clinical care with a cancer survivor care plan, but some survivors may require referral to services focused on stress and coping.

Following a successful course of treatment for cancer, many patients return to or remain in the care of their primary care physician (PCP). What often goes unrecognized, however, are these cancer survivors’ unique needs—physical, psychological, social, spiritual, economic, and legal—and the informational and professional services available to address them.^1,2

Increased cancer survival creates new needs. There are already >12 million cancer survivors in the United States and >30 million worldwide.³ As baby boomers age, the number of cancers diagnosed over the next 45 years will double⁴ and improved diagnosis and treatments are already prolonging survivors’ lives. With the greater number of cancer survivors and longer survival time, a cancer survivorship advocacy community has developed to help identify and address the concerns, needs, and benefits of having lived with, through, and beyond a cancer diagnosis.

The purpose of our study. Some of these areas of need have been studied extensively with childhood survivors, breast cancer survivors, and, more recently, prostate cancer survivors. However, few studies have examined adult survivors from all cancer types^5-9 or have had cohorts large enough to yield meaningful information.^5,7-9 The aim of this study was to describe the needs of adult survivors of all cancer types in a general population from Vermont and to determine whether these needs were met. The results of this study can help identify the services needed by cancer survivors.

METHODS

Population and sample

After effects
 of treatment, a big concern for most patients, 
is important to address not only at the outset 
of treatment but also at its conclusion
 and with documentation in a survivor care plan. In November 2009, we invited all survivors listed in a cancer survivor registry to complete a 12-page survey. The registry¹⁰ was created as part of the Cancer Survivor Community Study, a community-based participatory research project funded by the National Cancer Institute. The study’s Steering Committee was comprised of cancer survivors, cancer registrars, and researchers. We identified and invited cancer survivors from 4 hospital registries in northwest and central Vermont to participate. Registry participants who indicated willingness to enroll in research studies received an invitation letter and informed consent form, the 12-page survey, and an addressed and stamped return envelope. We obtained Institutional Review Board (IRB) approval for these procedures at the University of Vermont and at local hospital IRBs.

Instrument development

A working group from the Steering Committee reviewed a range of available instruments to assess cancer survivors’ needs.^9,11-15 We determined that the survey most relevant to our objectives was the Cancer Survivors’ Unmet Needs (CaSun) instrument.¹³ Because CaSun was developed in Australia, we carefully examined each question for appropriateness to our target audience. We eliminated several questions that we thought less important, added questions from other instruments, and simplified the survey format. Survivors from the Steering Committee pilot tested the draft questionnaire to identify awkward wording or concepts.

We piloted the revised draft using a standardized feedback form with cancer survivors who were not connected to our project and not enrolled in the survivor registry, and with residents at a senior center. Students and a teacher from an Adult Basic Education program helped to ensure easy readability. Our final instrument had 53 questions about needs in 5 domains. Questions within each domain completed the lead-in, “Since your cancer diagnosis, did you need....” We asked participants to check only 1 of the 3 boxes to the right of each question to indicate that there was no need in that area, that there was a need and it was met, or that there was a need and it was not met. We obtained self-reported demographic data during enrollment in the registry.

Data analysis

We summarized data by computing the percent of survivors who reported having each need (either met or unmet) and the percent for whom the need was unmet. The latter was computed both as a percent of all survivors and as a percent of those who had the need. We also calculated the percentage of survivors that had at least one need and at least one unmet need in each domain, as well as the average number of needs per survivor in each domain. We used SPSS for Unix, Release 6.1 (AIX 3.2)(IBM, Armonk, New York).

RESULTS

Of the 2005 cancer survivors invited into the study, 1668 responded, yielding a participation rate of 83%. TABLE 1 describes the self-reported demographic and cancer characteristics of participants in this study. Most respondents were female, ≥60 years old, urban dwellers, married or with a partner, well educated, and had household incomes of ≥$50,000. There were more breast cancer survivors than survivors of other cancers, and 14.6% of all survivors reported being diagnosed with more than one cancer. Cancer was diagnosed at stages 1 or 2 for 78.3% of the participants; 61.9% reported having undergone ≥2 treatment regimens.

The survey addressed needs in 5 domains: access to care and services (A); information (I); emotional, social, and spiritual (E); physical (P); and economic and legal (L). More than 80% of respondents reported having at least one need in the A, I, and E domains. The E domain had the most survivors with at least one unmet need (N=503), followed by the I (N=410) and P (N=375) domains.

Identifying unmet needs. TABLE 2 shows results for the specific questions within the domains in the order they were asked. Most participants who had a need also had it met. However, some needs that were not commonly reported were deemed unmet by a large proportion of those who expressed the need. For example, the A need for “A case manager to whom you could go to find out about services whenever they were needed” (A5) was reported by only 29.1% of survivors. But 32.1% of those reporting the need said it was unmet, which corresponds to 9.4% of all study participants having the need unmet. Similarly, the need for “More information about complementary and alternative medicine” (I3) was reported by about a quarter of the study population, 41.4% of whom (9.8% of all participants) reported it as unmet. In the P domain, the need for “Help to address problems with your sex life” (P4) was reported by only 26.5% of the respondents; yet 40.7% of those reporting the need had it unmet. Similarly, in the L domain, “Help with life insurance concerns as a result of your cancer” (L3) was only reported by 10.9% of the participants but was unmet for 46.4% of those who reported the need, or 5% of all study participants.

Most commonly expressed needs. TABLE 2 also identifies 12 needs reported by ≥50% of participants. Three of these needs were in the A domain, 6 in the I domain, and 3 in the E domain. The 2 most common needs related to A: the need “To feel like you were managing your health together with the medical team” (A3) was reported by 68.6% and was viewed as unmet by 5.2% of all respondents; the need for “Access to screening for recurrence or other cancers” (A7) was reported by 63.8% of the survivors but was deemed unmet by only 3.1% of all the respondents. “More information about possible after effects of your treatment” (I5) was a need for 63.2% that went unmet in 22.9% (14.4% of all participants). “Help managing your concerns about the cancer coming back” (E13) was reported as a need by 54.1% and as unmet by 11.8% of all participants.

The rank order of 7 unmet needs reported by ≥10% of the participants is shown in TABLE 3. Four of the 7 unmet needs were in the E domain. The most common unmet need in this domain was “Help reducing stress in your life” (E19).

Only 3 needs were both commonly reported and also unmet for at least 10% of the participants: “More information about possible after effects of your treatment” (I5), “More information about possible side effects of your treatment” (I4), and “Help managing your concerns about the cancer coming back” (E13).

DISCUSSION

Concern about cancer recurrence is 
a prominent patient need that might be addressed most adequately in the course of usual primary care. The survey instrument we used to assess the needs of cancer survivors in a large community-based registry included a detailed list of potential needs generated, in part, by representatives of the survivor community. Most cancer survivor needs mentioned in this survey were met. However, some needs were not met for substantial proportions of respondents and should be examined carefully to determine whether services could be improved to better address them. This study was planned and implemented by researchers and cancer survivors using community-based participatory principles to learn about local needs. The results of this study may be generalizable to similar populations of survivors and will inform the survivorship goals for the Vermont State Cancer Plan and future Vermont Cancer Survivor Network activities.

Acting on patients’ expressed needs. Over 80% of participants had needs in the A, I, and E domains. The most commonly reported need was in the A domain, “To feel like you were managing your health together with the medical team” (A3). It was also a top need in other studies that asked this question.^16,17 A cancer diagnosis may cause patients to feel out of control. Participation in the management of their health may help them gain a greater sense of control. PCP accommodation of expressed patient preferences may be an important part of a cancer survivor’s long-term adaptation to the disease.

Six of the 12 most frequently reported needs and 2 frequently reported unmet needs were in the I domain. Communication of information increases patients’ involvement in decision-making and enables them to cope better during diagnosis, treatment, and follow-up.¹⁸ “More information about possible after effects of your treatment” and “More information about possible side effects of your treatment” were reported by a high proportion of participants, and many also reported these needs as unmet. In another study about health-related information needs of survivors, 52% wanted more information about “What late and long-term side effects of cancer treatment are expected”¹⁹; and in a 2005 review of information needs, 12% of survivors reported similar needs.²⁰ Two recent articles also noted such needs in adolescent and young adult cancer survivors.^21,22 Based on current evidence, it would be advisable to discuss anticipated effects of treatment with patients not only at the outset but also at the end of treatment, and to write it in a cancer survivor care plan.

Individual needs that were not met for at least 10% of respondents, regardless of how common the need (TABLE 3), provided additional insights. Among these 7 needs, 3 also were reported as a need by more than 50% of respondents (TABLE 2), and 4 by <50%, indicating that some less common needs are not being met adequately. Among these 7 prominent unmet needs, 4 were E Issues (TABLE 3) and 2 were I Issues.

Because of the wide range of patients that primary care physicians serve, they might be better prepared to help cancer patients address problems with their sex lives. Unmet needs are an opportunity to improve care. In our study and in others, E needs were most likely to be unmet.^17,23-26 Among the 4 common unmet E needs, 2 (E19 and E11) focused on generalized stress and worry, and one (E15) focused on concern about illness impact on family members or partners. Although these issues may be challenging to address successfully in a typical clinical environment, others have confirmed the importance of these needs and proposed ways to meet them.²⁷ The fourth most common unmet E need focused on concern about cancer recurrence, also a prominent need found in other studies.^15-17 These needs might be addressed more adequately in the course of usual clinical care by PCPs or specialists. In fact, the American College of Surgeons’ Commission on Cancer 2012 standards now require psychosocial distress screening and the provision of referral for psychosocial services.²⁴ Our results are consistent in many respects with prior studies of needs reported by cancer survivors in other countries. The CaSUN survey developed by Hodgkinson et al¹³ has been applied to several survivor populations in Australia. In a diverse survivor sample, specific E, I, and A issues were frequently reported as unmet needs.¹³ The most prominent unmet needs in a gynecologic cancer sample using CaSUN focused on emotional and social issues such as worry, stress, coping, and relationships with, and expectations of, others.²⁵

Barg et al²³ conducted a survey of unmet needs in the United States using a detailed list based on prior survivor research and targeting individuals in a cancer registry. The most prominent area of need expressed was “emotional,” similar to the high rank of E needs in our study. In contrast to our study, however, physical and financial issues also were prominent. The latter variances might be explained by differences in access to care, or perhaps the study’s low response rate (23.8%). A similar survey reported by Campbell et al¹² identified needs in the emotional domain as the most cited unmet survivor needs based on psychometrically developed subscales of a 152-item survey (29% response rate).

These results from several studies, including ours, call for more detailed exploration of the E needs of long-term cancer survivors. A useful framework developed by Stein et al²⁸ accounts for factors contributing to cancer stress and burden as well as resources available to survivors (intrapersonal, social, informational, and tangible services), with the interactions between these 2 domains determining how well a survivor will be able to cope. There clearly is a role for development of more effective communication channels and focused services to meet survivor needs.

The list of most common unmet needs in TABLE 3 also includes a focus on “problems with your sex life” (P4). This is an area that may be difficult to address in a cancer care setting because of the focus on disease management. Primary care providers might be better prepared to address this issue because they likely encounter similar issues among the wide range of patients they serve. However, a recent study reported that only 46% of internists were somewhat or likely to initiate a discussion about sexuality with cancer survivors.²⁹ Some additional preparation for physicians to address this need might be warranted.

The proportion in this sample reporting needs for access to, or information about, complementary and alternative medicine services fell below the thresholds chosen to designate common needs in this study. Although reported use is relatively common among cancer survivor in several studies,^30-32 it appears that in our survivor sample, those who were interested in these approaches encountered only moderate barriers.

Study limitations. We invited participants from a registry unlikely to include cancer survivors with lower educational attainment or from rural locations⁹—that is, our participants were less likely to have challenges in obtaining appropriate services and information. This sample limitation therefore likely underestimates the overall level of needs among cancer survivors.

This was a cross-sectional assessment of perceived needs among a diverse group of survivors, which may have overlooked needs that were met but only after considerable effort on the part of survivors. Longitudinal studies would provide more complete accounts of how readily needs are met and the changes in needs at different times in the continuum of care.

The Vermont population is less diverse racially and ethnically, but not with respect to household income or educational attainment, than the overall US population. Access to health care also is relatively high in Vermont compared with many other states. According to a 2009 Vermont Household Health Insurance Survey, only 7.6% of Vermonters are uninsured.³³

CORRESPONDENCE
Berta Geller, EdD, University of Vermont, Health Promotion Research/Family Medicine, 1 South Prospect Street, Burlington, VT 05401-3444; berta.geller@uvm.edu

ACKNOWLEDGEMENTS
We would like to thank Anne Dorwaldt, Kathy Howe, Mark Bowman and John Mace at the University of Vermont, and the Cancer Survivor Community Study Steering Committee for their contributions to the successful completion of this study. We also thank the cancer survivors who participated in the pilot testing and the overall survey.