CCR 13

DESTIN, FLA. – The optimal rituximab dose and dosing intervals for maintenance treatment of granulomatosis with polyangiitis and microscopic polyangiitis are unknown, but the available data do provide some guidance for rituximab use in these diseases, according to Dr. Gary Hoffman.

Findings from the Rituximab in ANCA-Associated Vasculitis (RAVE) trial, for example, suggest that rituximab is an alternative to cyclophosphamide-based therapy. Steroid-free remission induction at 6 months in 197 participants with granulomatosis with polyangiitis (GPA) or microscopic polyangiitis (MPA) was similar at 64% and 53% in those treated with rituximab or cyclophosphamide/azathioprine, respectively; and 86% of patients overall achieved remission at 6 months when steroid dose was not taken into consideration (N. Engl. J. Med. 2010;363:221-32), said Dr. Hoffman, chairman of the department of rheumatic and immunologic diseases at the Cleveland Clinic and professor of medicine at the Cleveland Clinic’s Lerner College of Medicine.

The recently published 18-month results of the RAVE study indicate that a single, 4-week course of rituximab is similar to a continuous immunosuppression regimen of cyclophosphamide followed by azathioprine in inducing and maintaining remission (N. Engl. J. Med. 2013 Aug. 1 [doi:10.1056/NEJMoa1213277]).

In a retrospective study of 65 patients with various types of antineutrophil cytoplasmic antibody (ANCA)–associated vasculitis who experienced remission with either four once-weekly 375-mg treatments or two biweekly 1-g treatments of rituximab, 80% of patients relapsed within 2 years without maintenance therapy (Arthritis Rheum. 2009;60:2156-68).

"So that begs the question, what if you were to give rituximab repeatedly to prevent relapse?" Dr. Hoffman asked.

In another retrospective study of 73 patients with GPA or MPA, the relapse rate was 12% in 45 patients treated with rituximab every 6 months, compared with 73% in 28 patients treated as needed for relapse (Arthritis Rheum. 2012;64:3760-9).

The groups did not differ with respect to the rate of serious infections (18% and 14%, respectively) or mortality. The rate of malignancy was higher in the regular dosing group (4% vs. 0%) but the numbers were too small to conclude that treatment increases cancer risk, he said at the Congress of Clinical Rheumatology.

On the basis of these data, a large international, randomized controlled trial is now underway to better answer the question about repeat dosing, Dr. Hoffman noted.

In addition, interim findings from a French phase III study (MAINRITSAN), also presented at the annual meeting of the American College of Rheumatology last year as well as at the International Vasculitis and ANCA Workshop in Paris in April, show that a 500-mg dose of rituximab every 6 months is associated with a greater likelihood of staying in remission, compared with maintenance treatment with azathioprine at 2 mg/kg per day for 22 months.

The major relapse rate was 5% vs. 25%, the serious adverse event rate was 51% vs. 50%, and the mortality rate was 5% vs. 0% in the rituximab and azathioprine groups, respectively.

"Pretty compelling," Dr. Hoffman commented.

Based on all of these data, he said he uses rituximab for induction of remission in young women of reproductive age as an alternative to chronic cyclophosphamide, which can cause infertility.

"I don’t think we need to do that anymore, when we have an alternative effective agent," he said, adding: "I would apply the same rule to men who are planning a family, because the risk of infertility in men is also known to be significant."

Dr. Hoffman also uses rituximab to induce remission in patients in whom cyclophosphamide was used in the past for disease with severe relapses, and in those who have had a rituximab-mediated complete remission lasting at least 6 months if they experience relapse with critical organ system involvement for which cyclophosphamide would otherwise be considered.

"It’s the cumulative dose of cyclophosphamide that buys you that long-term toxicity, whether it’s infertility, marrow failure, increased risk of malignancy, cystitis, and so on. We try not to ever give people large cumulative doses of cyclophosphamide anymore," he said.

Patients in whom he would consider automatic maintenance rituximab include those previously treated with cyclophosphamide who have severe critical organ damage that is likely to lead to profound disability or death if the patient is exposed again to cyclophosphamide.

Conversely, he uses methotrexate or azathioprine, if well tolerated, for maintenance in those who have done extremely well on rituximab or cyclophosphamide, he said.

He typically tries to use cyclophosphamide for 3 months followed by the appropriate maintenance therapy. The available data suggest that once a patient is in remission and doing well, treatment should be maintained at a steady dose to prevent relapse unless toxicity mandates a change.

However, rituximab has not been adequately evaluated in cases of immediately life-threatening disease, while cyclophosphamide in this setting has both avoided organ damage and been lifesaving, he said.

Other areas that require further study are the effective dose and dosing intervals for rituximab maintenance, although some data suggest that both 500-mg and 1,000-mg doses every 6 months are effective, he noted.

Data are needed with respect to the long-term risks, as well. Some longer-term data in patients with rheumatoid arthritis suggest that serious infusion reactions are rare, and mortality is not increased, but GPA and MPA are very different diseases from RA, and additional study is needed. GPA and MPA, as well as other types of ANCA-associated vasculitis, are also very different from each other, and should be studied separately, he said.

Dr. Hoffman is a member of the data safety monitoring board for Roche and sanofi-aventis and is a consultant for Genentech and sanofi-aventis.

DESTIN, FLA. – The optimal rituximab dose and dosing intervals for maintenance treatment of granulomatosis with polyangiitis and microscopic polyangiitis are unknown, but the available data do provide some guidance for rituximab use in these diseases, according to Dr. Gary Hoffman.

Findings from the Rituximab in ANCA-Associated Vasculitis (RAVE) trial, for example, suggest that rituximab is an alternative to cyclophosphamide-based therapy. Steroid-free remission induction at 6 months in 197 participants with granulomatosis with polyangiitis (GPA) or microscopic polyangiitis (MPA) was similar at 64% and 53% in those treated with rituximab or cyclophosphamide/azathioprine, respectively; and 86% of patients overall achieved remission at 6 months when steroid dose was not taken into consideration (N. Engl. J. Med. 2010;363:221-32), said Dr. Hoffman, chairman of the department of rheumatic and immunologic diseases at the Cleveland Clinic and professor of medicine at the Cleveland Clinic’s Lerner College of Medicine.

The recently published 18-month results of the RAVE study indicate that a single, 4-week course of rituximab is similar to a continuous immunosuppression regimen of cyclophosphamide followed by azathioprine in inducing and maintaining remission (N. Engl. J. Med. 2013 Aug. 1 [doi:10.1056/NEJMoa1213277]).

In a retrospective study of 65 patients with various types of antineutrophil cytoplasmic antibody (ANCA)–associated vasculitis who experienced remission with either four once-weekly 375-mg treatments or two biweekly 1-g treatments of rituximab, 80% of patients relapsed within 2 years without maintenance therapy (Arthritis Rheum. 2009;60:2156-68).

"So that begs the question, what if you were to give rituximab repeatedly to prevent relapse?" Dr. Hoffman asked.

In another retrospective study of 73 patients with GPA or MPA, the relapse rate was 12% in 45 patients treated with rituximab every 6 months, compared with 73% in 28 patients treated as needed for relapse (Arthritis Rheum. 2012;64:3760-9).

The groups did not differ with respect to the rate of serious infections (18% and 14%, respectively) or mortality. The rate of malignancy was higher in the regular dosing group (4% vs. 0%) but the numbers were too small to conclude that treatment increases cancer risk, he said at the Congress of Clinical Rheumatology.

On the basis of these data, a large international, randomized controlled trial is now underway to better answer the question about repeat dosing, Dr. Hoffman noted.

In addition, interim findings from a French phase III study (MAINRITSAN), also presented at the annual meeting of the American College of Rheumatology last year as well as at the International Vasculitis and ANCA Workshop in Paris in April, show that a 500-mg dose of rituximab every 6 months is associated with a greater likelihood of staying in remission, compared with maintenance treatment with azathioprine at 2 mg/kg per day for 22 months.

The major relapse rate was 5% vs. 25%, the serious adverse event rate was 51% vs. 50%, and the mortality rate was 5% vs. 0% in the rituximab and azathioprine groups, respectively.

"Pretty compelling," Dr. Hoffman commented.

Based on all of these data, he said he uses rituximab for induction of remission in young women of reproductive age as an alternative to chronic cyclophosphamide, which can cause infertility.

"I don’t think we need to do that anymore, when we have an alternative effective agent," he said, adding: "I would apply the same rule to men who are planning a family, because the risk of infertility in men is also known to be significant."

Dr. Hoffman also uses rituximab to induce remission in patients in whom cyclophosphamide was used in the past for disease with severe relapses, and in those who have had a rituximab-mediated complete remission lasting at least 6 months if they experience relapse with critical organ system involvement for which cyclophosphamide would otherwise be considered.

"It’s the cumulative dose of cyclophosphamide that buys you that long-term toxicity, whether it’s infertility, marrow failure, increased risk of malignancy, cystitis, and so on. We try not to ever give people large cumulative doses of cyclophosphamide anymore," he said.

Patients in whom he would consider automatic maintenance rituximab include those previously treated with cyclophosphamide who have severe critical organ damage that is likely to lead to profound disability or death if the patient is exposed again to cyclophosphamide.

Conversely, he uses methotrexate or azathioprine, if well tolerated, for maintenance in those who have done extremely well on rituximab or cyclophosphamide, he said.

He typically tries to use cyclophosphamide for 3 months followed by the appropriate maintenance therapy. The available data suggest that once a patient is in remission and doing well, treatment should be maintained at a steady dose to prevent relapse unless toxicity mandates a change.

However, rituximab has not been adequately evaluated in cases of immediately life-threatening disease, while cyclophosphamide in this setting has both avoided organ damage and been lifesaving, he said.

Other areas that require further study are the effective dose and dosing intervals for rituximab maintenance, although some data suggest that both 500-mg and 1,000-mg doses every 6 months are effective, he noted.

Data are needed with respect to the long-term risks, as well. Some longer-term data in patients with rheumatoid arthritis suggest that serious infusion reactions are rare, and mortality is not increased, but GPA and MPA are very different diseases from RA, and additional study is needed. GPA and MPA, as well as other types of ANCA-associated vasculitis, are also very different from each other, and should be studied separately, he said.

Dr. Hoffman is a member of the data safety monitoring board for Roche and sanofi-aventis and is a consultant for Genentech and sanofi-aventis.

DESTIN, FLA. – The optimal rituximab dose and dosing intervals for maintenance treatment of granulomatosis with polyangiitis and microscopic polyangiitis are unknown, but the available data do provide some guidance for rituximab use in these diseases, according to Dr. Gary Hoffman.

Findings from the Rituximab in ANCA-Associated Vasculitis (RAVE) trial, for example, suggest that rituximab is an alternative to cyclophosphamide-based therapy. Steroid-free remission induction at 6 months in 197 participants with granulomatosis with polyangiitis (GPA) or microscopic polyangiitis (MPA) was similar at 64% and 53% in those treated with rituximab or cyclophosphamide/azathioprine, respectively; and 86% of patients overall achieved remission at 6 months when steroid dose was not taken into consideration (N. Engl. J. Med. 2010;363:221-32), said Dr. Hoffman, chairman of the department of rheumatic and immunologic diseases at the Cleveland Clinic and professor of medicine at the Cleveland Clinic’s Lerner College of Medicine.

The recently published 18-month results of the RAVE study indicate that a single, 4-week course of rituximab is similar to a continuous immunosuppression regimen of cyclophosphamide followed by azathioprine in inducing and maintaining remission (N. Engl. J. Med. 2013 Aug. 1 [doi:10.1056/NEJMoa1213277]).

In a retrospective study of 65 patients with various types of antineutrophil cytoplasmic antibody (ANCA)–associated vasculitis who experienced remission with either four once-weekly 375-mg treatments or two biweekly 1-g treatments of rituximab, 80% of patients relapsed within 2 years without maintenance therapy (Arthritis Rheum. 2009;60:2156-68).

"So that begs the question, what if you were to give rituximab repeatedly to prevent relapse?" Dr. Hoffman asked.

In another retrospective study of 73 patients with GPA or MPA, the relapse rate was 12% in 45 patients treated with rituximab every 6 months, compared with 73% in 28 patients treated as needed for relapse (Arthritis Rheum. 2012;64:3760-9).

The groups did not differ with respect to the rate of serious infections (18% and 14%, respectively) or mortality. The rate of malignancy was higher in the regular dosing group (4% vs. 0%) but the numbers were too small to conclude that treatment increases cancer risk, he said at the Congress of Clinical Rheumatology.

On the basis of these data, a large international, randomized controlled trial is now underway to better answer the question about repeat dosing, Dr. Hoffman noted.

In addition, interim findings from a French phase III study (MAINRITSAN), also presented at the annual meeting of the American College of Rheumatology last year as well as at the International Vasculitis and ANCA Workshop in Paris in April, show that a 500-mg dose of rituximab every 6 months is associated with a greater likelihood of staying in remission, compared with maintenance treatment with azathioprine at 2 mg/kg per day for 22 months.

The major relapse rate was 5% vs. 25%, the serious adverse event rate was 51% vs. 50%, and the mortality rate was 5% vs. 0% in the rituximab and azathioprine groups, respectively.

"Pretty compelling," Dr. Hoffman commented.

Based on all of these data, he said he uses rituximab for induction of remission in young women of reproductive age as an alternative to chronic cyclophosphamide, which can cause infertility.

"I don’t think we need to do that anymore, when we have an alternative effective agent," he said, adding: "I would apply the same rule to men who are planning a family, because the risk of infertility in men is also known to be significant."

Dr. Hoffman also uses rituximab to induce remission in patients in whom cyclophosphamide was used in the past for disease with severe relapses, and in those who have had a rituximab-mediated complete remission lasting at least 6 months if they experience relapse with critical organ system involvement for which cyclophosphamide would otherwise be considered.

"It’s the cumulative dose of cyclophosphamide that buys you that long-term toxicity, whether it’s infertility, marrow failure, increased risk of malignancy, cystitis, and so on. We try not to ever give people large cumulative doses of cyclophosphamide anymore," he said.

Patients in whom he would consider automatic maintenance rituximab include those previously treated with cyclophosphamide who have severe critical organ damage that is likely to lead to profound disability or death if the patient is exposed again to cyclophosphamide.

Conversely, he uses methotrexate or azathioprine, if well tolerated, for maintenance in those who have done extremely well on rituximab or cyclophosphamide, he said.

He typically tries to use cyclophosphamide for 3 months followed by the appropriate maintenance therapy. The available data suggest that once a patient is in remission and doing well, treatment should be maintained at a steady dose to prevent relapse unless toxicity mandates a change.

However, rituximab has not been adequately evaluated in cases of immediately life-threatening disease, while cyclophosphamide in this setting has both avoided organ damage and been lifesaving, he said.

Other areas that require further study are the effective dose and dosing intervals for rituximab maintenance, although some data suggest that both 500-mg and 1,000-mg doses every 6 months are effective, he noted.

Data are needed with respect to the long-term risks, as well. Some longer-term data in patients with rheumatoid arthritis suggest that serious infusion reactions are rare, and mortality is not increased, but GPA and MPA are very different diseases from RA, and additional study is needed. GPA and MPA, as well as other types of ANCA-associated vasculitis, are also very different from each other, and should be studied separately, he said.

Dr. Hoffman is a member of the data safety monitoring board for Roche and sanofi-aventis and is a consultant for Genentech and sanofi-aventis.

DESTIN, FLA. – Patients with lupus are at increased risk for a number of long-term health issues that should be considered during the course of their care, according to Dr. Susan Manzi.

Bone disease, cardiovascular disease, cancer, and infection are particular areas of concern, Dr. Manzi said at the Congress of Clinical Rheumatology.

• Bone health. Women with systemic lupus erythematosus are known to be at increased risk for fractures. A 1999 retrospective cohort study, for example, showed that the observed number of nontraumatic fractures in more than 700 women with SLE was about fivefold greater than in the general population (Arthritis Rheum. 1999;42:882-90).

The standardized morbidity ratios ranged from 2.4 to 12.1 for various age groups, with the greatest risks in those aged 18-24 years (12.1), 45-64 years (7.6), and 70 years and older (4.9).

"We know that we cause a lot of the bone loss; we know that the bone loss may be part of the underlying disease. The fact is it’s there. We need to monitor for it and treat it," Dr. Manzi said. She noted that American College of Rheumatology guidelines are available to help in reducing fracture risk in patients with connective tissue diseases, such as lupus (Arthritis Care Res. 2010;62:1515-26).

• Cardiovascular health. Similarly, myocardial infarctions per 1,000 person-years are significantly greater among those with SLE than in the general population, according to the 1997 Framingham Offspring Study.

In that study, Dr. Manzi and her colleagues found that the incidence of MI was higher in SLE patients in every age category. The risk was 50-fold greater in those with SLE who were aged 35-44 years, compared with the overall study population (Am. J. Epidemiol. 1997;145:408-15).

Of note, in 2011 the American Heart Association officially recognized women with lupus and rheumatoid arthritis as at-risk groups for cardiovascular disease, and developed treatment and management recommendations for these groups, said Dr. Manzi, director of the Lupus Center of Excellence at the University of Pittsburgh. The AHA noted that SLE and RA may be unrecognized risk factors and that women with these conditions, even without clinically relevant cardiovascular disease, should be considered at risk and should be screened accordingly. The AHA recommendations "actually suggested that any woman who comes in with a cardiovascular event, particularly if it’s unexplained and they are young, should be screened for lupus and rheumatoid arthritis," she said.

• Cancer. In a 2005 study of more than 13,000 women from 30 centers, patients with lupus had a 20% increased risk for cancer, compared with the general population. A recent update similarly showed a 15%-20% increased risk (J. Autoimmun. 2013;42:130-5).

The greatest risk was for hematologic cancers, such as lymphomas and leukemia. Lung cancer and thyroid cancer were also increased in the lupus patients. A trend toward an increased risk of cervical and vulvar cancers was also noted, which could be associated with human papillomavirus infection. "This means we should be doing more paps and pelvics," she said.

Interestingly, women with SLE appear to have a reduced risk of breast, ovarian, and endometrial cancers, possibly as a result of avoidance of hormone replacement therapy, she said (Arthritis Rheum. 2005;52:1481-90).

• Infection. Patients with lupus are known to have an increased risk for infection, and it is important to exercise caution when using live attenuated vaccines. These include the herpes zoster vaccine; bacillus Calmette-Guérin tuberculosis vaccine; oral typhoid vaccine; measles, mumps, and rubella vaccine; varicella vaccine; oral polio vaccine; intranasal influenza vaccine; yellow fever vaccine; and endemic typhus vaccine, Dr. Manzi said.

These vaccines are not recommended for SLE patients being treated with immunosuppressive or biologic medications or with low immunoglobulins or hypocomplementemia.

Dr. Manzi has served as a consultant and/or advisory board member for Bristol-Myers Squibb, Exagen Diagnostics, Genentech, and other companies.

DESTIN, FLA. – Patients with lupus are at increased risk for a number of long-term health issues that should be considered during the course of their care, according to Dr. Susan Manzi.

Bone disease, cardiovascular disease, cancer, and infection are particular areas of concern, Dr. Manzi said at the Congress of Clinical Rheumatology.

• Bone health. Women with systemic lupus erythematosus are known to be at increased risk for fractures. A 1999 retrospective cohort study, for example, showed that the observed number of nontraumatic fractures in more than 700 women with SLE was about fivefold greater than in the general population (Arthritis Rheum. 1999;42:882-90).

The standardized morbidity ratios ranged from 2.4 to 12.1 for various age groups, with the greatest risks in those aged 18-24 years (12.1), 45-64 years (7.6), and 70 years and older (4.9).

"We know that we cause a lot of the bone loss; we know that the bone loss may be part of the underlying disease. The fact is it’s there. We need to monitor for it and treat it," Dr. Manzi said. She noted that American College of Rheumatology guidelines are available to help in reducing fracture risk in patients with connective tissue diseases, such as lupus (Arthritis Care Res. 2010;62:1515-26).

• Cardiovascular health. Similarly, myocardial infarctions per 1,000 person-years are significantly greater among those with SLE than in the general population, according to the 1997 Framingham Offspring Study.

In that study, Dr. Manzi and her colleagues found that the incidence of MI was higher in SLE patients in every age category. The risk was 50-fold greater in those with SLE who were aged 35-44 years, compared with the overall study population (Am. J. Epidemiol. 1997;145:408-15).

Of note, in 2011 the American Heart Association officially recognized women with lupus and rheumatoid arthritis as at-risk groups for cardiovascular disease, and developed treatment and management recommendations for these groups, said Dr. Manzi, director of the Lupus Center of Excellence at the University of Pittsburgh. The AHA noted that SLE and RA may be unrecognized risk factors and that women with these conditions, even without clinically relevant cardiovascular disease, should be considered at risk and should be screened accordingly. The AHA recommendations "actually suggested that any woman who comes in with a cardiovascular event, particularly if it’s unexplained and they are young, should be screened for lupus and rheumatoid arthritis," she said.

• Cancer. In a 2005 study of more than 13,000 women from 30 centers, patients with lupus had a 20% increased risk for cancer, compared with the general population. A recent update similarly showed a 15%-20% increased risk (J. Autoimmun. 2013;42:130-5).

The greatest risk was for hematologic cancers, such as lymphomas and leukemia. Lung cancer and thyroid cancer were also increased in the lupus patients. A trend toward an increased risk of cervical and vulvar cancers was also noted, which could be associated with human papillomavirus infection. "This means we should be doing more paps and pelvics," she said.

Interestingly, women with SLE appear to have a reduced risk of breast, ovarian, and endometrial cancers, possibly as a result of avoidance of hormone replacement therapy, she said (Arthritis Rheum. 2005;52:1481-90).

• Infection. Patients with lupus are known to have an increased risk for infection, and it is important to exercise caution when using live attenuated vaccines. These include the herpes zoster vaccine; bacillus Calmette-Guérin tuberculosis vaccine; oral typhoid vaccine; measles, mumps, and rubella vaccine; varicella vaccine; oral polio vaccine; intranasal influenza vaccine; yellow fever vaccine; and endemic typhus vaccine, Dr. Manzi said.

These vaccines are not recommended for SLE patients being treated with immunosuppressive or biologic medications or with low immunoglobulins or hypocomplementemia.

Dr. Manzi has served as a consultant and/or advisory board member for Bristol-Myers Squibb, Exagen Diagnostics, Genentech, and other companies.

DESTIN, FLA. – Patients with lupus are at increased risk for a number of long-term health issues that should be considered during the course of their care, according to Dr. Susan Manzi.

Bone disease, cardiovascular disease, cancer, and infection are particular areas of concern, Dr. Manzi said at the Congress of Clinical Rheumatology.

• Bone health. Women with systemic lupus erythematosus are known to be at increased risk for fractures. A 1999 retrospective cohort study, for example, showed that the observed number of nontraumatic fractures in more than 700 women with SLE was about fivefold greater than in the general population (Arthritis Rheum. 1999;42:882-90).

The standardized morbidity ratios ranged from 2.4 to 12.1 for various age groups, with the greatest risks in those aged 18-24 years (12.1), 45-64 years (7.6), and 70 years and older (4.9).

"We know that we cause a lot of the bone loss; we know that the bone loss may be part of the underlying disease. The fact is it’s there. We need to monitor for it and treat it," Dr. Manzi said. She noted that American College of Rheumatology guidelines are available to help in reducing fracture risk in patients with connective tissue diseases, such as lupus (Arthritis Care Res. 2010;62:1515-26).

• Cardiovascular health. Similarly, myocardial infarctions per 1,000 person-years are significantly greater among those with SLE than in the general population, according to the 1997 Framingham Offspring Study.

In that study, Dr. Manzi and her colleagues found that the incidence of MI was higher in SLE patients in every age category. The risk was 50-fold greater in those with SLE who were aged 35-44 years, compared with the overall study population (Am. J. Epidemiol. 1997;145:408-15).

Of note, in 2011 the American Heart Association officially recognized women with lupus and rheumatoid arthritis as at-risk groups for cardiovascular disease, and developed treatment and management recommendations for these groups, said Dr. Manzi, director of the Lupus Center of Excellence at the University of Pittsburgh. The AHA noted that SLE and RA may be unrecognized risk factors and that women with these conditions, even without clinically relevant cardiovascular disease, should be considered at risk and should be screened accordingly. The AHA recommendations "actually suggested that any woman who comes in with a cardiovascular event, particularly if it’s unexplained and they are young, should be screened for lupus and rheumatoid arthritis," she said.

• Cancer. In a 2005 study of more than 13,000 women from 30 centers, patients with lupus had a 20% increased risk for cancer, compared with the general population. A recent update similarly showed a 15%-20% increased risk (J. Autoimmun. 2013;42:130-5).

The greatest risk was for hematologic cancers, such as lymphomas and leukemia. Lung cancer and thyroid cancer were also increased in the lupus patients. A trend toward an increased risk of cervical and vulvar cancers was also noted, which could be associated with human papillomavirus infection. "This means we should be doing more paps and pelvics," she said.

Interestingly, women with SLE appear to have a reduced risk of breast, ovarian, and endometrial cancers, possibly as a result of avoidance of hormone replacement therapy, she said (Arthritis Rheum. 2005;52:1481-90).

• Infection. Patients with lupus are known to have an increased risk for infection, and it is important to exercise caution when using live attenuated vaccines. These include the herpes zoster vaccine; bacillus Calmette-Guérin tuberculosis vaccine; oral typhoid vaccine; measles, mumps, and rubella vaccine; varicella vaccine; oral polio vaccine; intranasal influenza vaccine; yellow fever vaccine; and endemic typhus vaccine, Dr. Manzi said.

These vaccines are not recommended for SLE patients being treated with immunosuppressive or biologic medications or with low immunoglobulins or hypocomplementemia.

Dr. Manzi has served as a consultant and/or advisory board member for Bristol-Myers Squibb, Exagen Diagnostics, Genentech, and other companies.

DESTIN, FLORIDA – Central nervous system manifestations in patients with systemic lupus erythematosus should always trigger an evaluation for infection and other non–SLE-related etiologies, according to Dr. Julius Birnbaum.

That’s because between 33% and 50% of SLE patients will have a CNS syndrome that is not caused by SLE, Dr. Birnbaum said at the annual Congress of Clinical Rheumatology.

Infection is among the top causes of such syndromes.

"Because lupus patients are on immunosuppressive therapy, there always needs to be this paranoia for this lurking possibility of an infection," stressed Dr. Birnbaum of the departments of medicine and neurology at Johns Hopkins University, Baltimore.

The VITAMIN mnemonic device, similar to the VITAMINS mnemonic device he recommends for developing the differential diagnosis for peripheral nervous system manifestations, can also help with the differential diagnosis for CNS manifestation in neuropsychiatric SLE, he said.

"The stakes are a little bit higher now when we’re dealing with a lupus patient because we really want to make sure that we’re not overlooking a syndrome which would be exacerbated and not helped if we start immunosuppressive therapy," he said.

VITAMIN in this case represents:

• V – Vascular. In terms of stroke, it is important to think about septic emboli, subarachnoid hemorrhage from mycotic aneurysms, and septic thrombophlebitis.

• I – Infections. These should be classified by etiology (that is, bacterial, fungal, viral) and by anatomic region (is it parenchymal or meningeal, or does it have a vascular distribution, as in the case of septic emboli or thrombophlebitis?).

• T – Trauma. In SLE, this cause of CNS symptoms is similar to the general population.

• A – Autoimmune disorders. Always look for other autoimmune diseases as a cause.

• M – Metabolic disorders. These are uncommon as a cause of CNS symptoms, but may include hyperhomocysteinemia and B₁₂ deficiency.

• I – Iatrogenic complications. These are a major concern, and can include metabolic complications associated with steroid use or infections caused by immunosuppressive therapy.

• N – Neoplastic syndromes.

Dr. Birnbaum suggested using the VITAMIN mnemonic to get ideas for potentially useful diagnostic strategies, including routine serologic studies (such as an evaluation for uremia as a cause for encephalopathy or seizures); a work-up for infection (possibly including lumbar puncture); neuroimaging studies (such as CT to exclude a hemorrhage and MRI to further characterize space occupying lesions using specific sequences for strokes, for example); and diagnostic-specific strategies for distinct CNS disorders, such as EEG for the evaluation of seizures.

"Everything germinates from the patient’s symptoms ... you start with the symptoms, you do your neurological examination, and all of these tests that you’re going to order should be subordinated under a unifying strategy based on just the symptom and the examination," he said.

The next step, after reviewing the differential diagnosis, is to consider the specificity of a particular CNS syndrome for neuropsychiatric SLE, Dr. Birnbaum said.

Importantly, among the syndromes included in the American College of Rheumatology neuropsychiatric SLE nomenclature and case definition for the CNS neuropsychiatric SLE spectrum are several that have been shown – since the list was developed 15 years ago – to be nonspecific in that they are seen with similar frequency in non-SLE controls, he said.

These include headache, mood disorders, anxiety disorders, and mild cognitive impairment. In most cases, once "sinister causes" are ruled out using the VITAMIN mnemonic, these can be evaluated and treated as if the patient does not have SLE.

Only rarely are these nonspecific syndromes actually a manifestation of pathologic mechanism specific to SLE. In the right clinical context, examples may include an intractable "lupus headache" and depression or depression with unusual catatonic features, Dr. Birnbaum said.

"These are extraordinarily uncommon ... I want to emphasize that a neurological work-up can be standardized, but it is layered with some nuance, so there is no substitute for individual judgment," he said.

As for decisions regarding instituting symptomatic vs. immunosuppressive therapy, much of the decision will be based on the timing of the onset of symptoms relative to the onset of lupus.

"By and large, neurological symptoms that occur early into the onset of lupus tend to be more associated with lupus disease. Those neurological symptoms that occur later tend to be associated with damage," he said.

Seizures that occur in a young adult within 2 years of the onset of lupus, for example, tend to be associated with extraneurologic disease activity and increased organ activity. In this context, institution of immunosuppressive therapy for the extraneurologic disease should be considered.

Somewhat paradoxically, symptomatic therapy is usually needed only short term in cases with onset early in the course of lupus, because neurologic syndromes that occur early in disease onset are generally inflammatory and respond well, Dr. Birnbaum said.

Conversely, immunosuppressive therapy is usually not needed in cases of CNS symptom onset at 2 or more years after lupus onset, but these patients may require prolonged symptomatic therapy, he said, explaining that the symptoms often are due to permanent damage.

Dr. Birnbaum reported having no disclosures.

DESTIN, FLORIDA – Central nervous system manifestations in patients with systemic lupus erythematosus should always trigger an evaluation for infection and other non–SLE-related etiologies, according to Dr. Julius Birnbaum.

That’s because between 33% and 50% of SLE patients will have a CNS syndrome that is not caused by SLE, Dr. Birnbaum said at the annual Congress of Clinical Rheumatology.

Infection is among the top causes of such syndromes.

"Because lupus patients are on immunosuppressive therapy, there always needs to be this paranoia for this lurking possibility of an infection," stressed Dr. Birnbaum of the departments of medicine and neurology at Johns Hopkins University, Baltimore.

The VITAMIN mnemonic device, similar to the VITAMINS mnemonic device he recommends for developing the differential diagnosis for peripheral nervous system manifestations, can also help with the differential diagnosis for CNS manifestation in neuropsychiatric SLE, he said.

"The stakes are a little bit higher now when we’re dealing with a lupus patient because we really want to make sure that we’re not overlooking a syndrome which would be exacerbated and not helped if we start immunosuppressive therapy," he said.

VITAMIN in this case represents:

• V – Vascular. In terms of stroke, it is important to think about septic emboli, subarachnoid hemorrhage from mycotic aneurysms, and septic thrombophlebitis.

• I – Infections. These should be classified by etiology (that is, bacterial, fungal, viral) and by anatomic region (is it parenchymal or meningeal, or does it have a vascular distribution, as in the case of septic emboli or thrombophlebitis?).

• T – Trauma. In SLE, this cause of CNS symptoms is similar to the general population.

• A – Autoimmune disorders. Always look for other autoimmune diseases as a cause.

• M – Metabolic disorders. These are uncommon as a cause of CNS symptoms, but may include hyperhomocysteinemia and B₁₂ deficiency.

• I – Iatrogenic complications. These are a major concern, and can include metabolic complications associated with steroid use or infections caused by immunosuppressive therapy.

• N – Neoplastic syndromes.

Dr. Birnbaum suggested using the VITAMIN mnemonic to get ideas for potentially useful diagnostic strategies, including routine serologic studies (such as an evaluation for uremia as a cause for encephalopathy or seizures); a work-up for infection (possibly including lumbar puncture); neuroimaging studies (such as CT to exclude a hemorrhage and MRI to further characterize space occupying lesions using specific sequences for strokes, for example); and diagnostic-specific strategies for distinct CNS disorders, such as EEG for the evaluation of seizures.

"Everything germinates from the patient’s symptoms ... you start with the symptoms, you do your neurological examination, and all of these tests that you’re going to order should be subordinated under a unifying strategy based on just the symptom and the examination," he said.

The next step, after reviewing the differential diagnosis, is to consider the specificity of a particular CNS syndrome for neuropsychiatric SLE, Dr. Birnbaum said.

Importantly, among the syndromes included in the American College of Rheumatology neuropsychiatric SLE nomenclature and case definition for the CNS neuropsychiatric SLE spectrum are several that have been shown – since the list was developed 15 years ago – to be nonspecific in that they are seen with similar frequency in non-SLE controls, he said.

These include headache, mood disorders, anxiety disorders, and mild cognitive impairment. In most cases, once "sinister causes" are ruled out using the VITAMIN mnemonic, these can be evaluated and treated as if the patient does not have SLE.

Only rarely are these nonspecific syndromes actually a manifestation of pathologic mechanism specific to SLE. In the right clinical context, examples may include an intractable "lupus headache" and depression or depression with unusual catatonic features, Dr. Birnbaum said.

"These are extraordinarily uncommon ... I want to emphasize that a neurological work-up can be standardized, but it is layered with some nuance, so there is no substitute for individual judgment," he said.

As for decisions regarding instituting symptomatic vs. immunosuppressive therapy, much of the decision will be based on the timing of the onset of symptoms relative to the onset of lupus.

"By and large, neurological symptoms that occur early into the onset of lupus tend to be more associated with lupus disease. Those neurological symptoms that occur later tend to be associated with damage," he said.

Seizures that occur in a young adult within 2 years of the onset of lupus, for example, tend to be associated with extraneurologic disease activity and increased organ activity. In this context, institution of immunosuppressive therapy for the extraneurologic disease should be considered.

Somewhat paradoxically, symptomatic therapy is usually needed only short term in cases with onset early in the course of lupus, because neurologic syndromes that occur early in disease onset are generally inflammatory and respond well, Dr. Birnbaum said.

Conversely, immunosuppressive therapy is usually not needed in cases of CNS symptom onset at 2 or more years after lupus onset, but these patients may require prolonged symptomatic therapy, he said, explaining that the symptoms often are due to permanent damage.

Dr. Birnbaum reported having no disclosures.

DESTIN, FLORIDA – Central nervous system manifestations in patients with systemic lupus erythematosus should always trigger an evaluation for infection and other non–SLE-related etiologies, according to Dr. Julius Birnbaum.

That’s because between 33% and 50% of SLE patients will have a CNS syndrome that is not caused by SLE, Dr. Birnbaum said at the annual Congress of Clinical Rheumatology.

Infection is among the top causes of such syndromes.

"Because lupus patients are on immunosuppressive therapy, there always needs to be this paranoia for this lurking possibility of an infection," stressed Dr. Birnbaum of the departments of medicine and neurology at Johns Hopkins University, Baltimore.

The VITAMIN mnemonic device, similar to the VITAMINS mnemonic device he recommends for developing the differential diagnosis for peripheral nervous system manifestations, can also help with the differential diagnosis for CNS manifestation in neuropsychiatric SLE, he said.

"The stakes are a little bit higher now when we’re dealing with a lupus patient because we really want to make sure that we’re not overlooking a syndrome which would be exacerbated and not helped if we start immunosuppressive therapy," he said.

VITAMIN in this case represents:

• V – Vascular. In terms of stroke, it is important to think about septic emboli, subarachnoid hemorrhage from mycotic aneurysms, and septic thrombophlebitis.

• I – Infections. These should be classified by etiology (that is, bacterial, fungal, viral) and by anatomic region (is it parenchymal or meningeal, or does it have a vascular distribution, as in the case of septic emboli or thrombophlebitis?).

• T – Trauma. In SLE, this cause of CNS symptoms is similar to the general population.

• A – Autoimmune disorders. Always look for other autoimmune diseases as a cause.

• M – Metabolic disorders. These are uncommon as a cause of CNS symptoms, but may include hyperhomocysteinemia and B₁₂ deficiency.

• I – Iatrogenic complications. These are a major concern, and can include metabolic complications associated with steroid use or infections caused by immunosuppressive therapy.

• N – Neoplastic syndromes.

Dr. Birnbaum suggested using the VITAMIN mnemonic to get ideas for potentially useful diagnostic strategies, including routine serologic studies (such as an evaluation for uremia as a cause for encephalopathy or seizures); a work-up for infection (possibly including lumbar puncture); neuroimaging studies (such as CT to exclude a hemorrhage and MRI to further characterize space occupying lesions using specific sequences for strokes, for example); and diagnostic-specific strategies for distinct CNS disorders, such as EEG for the evaluation of seizures.

"Everything germinates from the patient’s symptoms ... you start with the symptoms, you do your neurological examination, and all of these tests that you’re going to order should be subordinated under a unifying strategy based on just the symptom and the examination," he said.

The next step, after reviewing the differential diagnosis, is to consider the specificity of a particular CNS syndrome for neuropsychiatric SLE, Dr. Birnbaum said.

Importantly, among the syndromes included in the American College of Rheumatology neuropsychiatric SLE nomenclature and case definition for the CNS neuropsychiatric SLE spectrum are several that have been shown – since the list was developed 15 years ago – to be nonspecific in that they are seen with similar frequency in non-SLE controls, he said.

These include headache, mood disorders, anxiety disorders, and mild cognitive impairment. In most cases, once "sinister causes" are ruled out using the VITAMIN mnemonic, these can be evaluated and treated as if the patient does not have SLE.

Only rarely are these nonspecific syndromes actually a manifestation of pathologic mechanism specific to SLE. In the right clinical context, examples may include an intractable "lupus headache" and depression or depression with unusual catatonic features, Dr. Birnbaum said.

"These are extraordinarily uncommon ... I want to emphasize that a neurological work-up can be standardized, but it is layered with some nuance, so there is no substitute for individual judgment," he said.

As for decisions regarding instituting symptomatic vs. immunosuppressive therapy, much of the decision will be based on the timing of the onset of symptoms relative to the onset of lupus.

"By and large, neurological symptoms that occur early into the onset of lupus tend to be more associated with lupus disease. Those neurological symptoms that occur later tend to be associated with damage," he said.

Seizures that occur in a young adult within 2 years of the onset of lupus, for example, tend to be associated with extraneurologic disease activity and increased organ activity. In this context, institution of immunosuppressive therapy for the extraneurologic disease should be considered.

Somewhat paradoxically, symptomatic therapy is usually needed only short term in cases with onset early in the course of lupus, because neurologic syndromes that occur early in disease onset are generally inflammatory and respond well, Dr. Birnbaum said.

Conversely, immunosuppressive therapy is usually not needed in cases of CNS symptom onset at 2 or more years after lupus onset, but these patients may require prolonged symptomatic therapy, he said, explaining that the symptoms often are due to permanent damage.

Dr. Birnbaum reported having no disclosures.

DESTIN, FLA. – Arthritis self-management programs can ease the transition from pediatric to adult care for many adolescents with juvenile idiopathic arthritis, according to Dr. Brian Feldman.

Not only are adolescent patients coping with rapid physical growth and pubertal changes that can have detrimental effects in patients with chronic conditions, they also are developing a personal identity and seeking independence. As a result, adolescence is a time when parental influence can disintegrate, risk-taking behaviors may increase – and medication adherence may go by the wayside, he said at the Congress of Clinical Rheumatology.

A meta-analysis involving 569 studies of adults and children with various chronic conditions showed that on average, medication adherence was 75%, but a closer look at the pediatric population shows that adherence declines substantially during the teenage years, said Dr. Feldman, professor of pediatrics and medicine at the University of Toronto, and head of the division of rheumatology at the Hospital for Sick Children, also in Toronto.

In another study of 40 juvenile arthritis patients started on NSAID treatment, only 60% took their medications as prescribed.

These issues are not new, but they have garnered increasing attention in the past decade, beginning with a 2002 consensus statement on health care transitions for young adults with special health care needs (Pediatrics 2002;110[Suppl. 3]:1304-6). The statement, developed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine stresses the importance of the transition process, and characterizes it as a dynamic lifelong process with a goal of maximizing lifelong functioning and potential through high-quality, uninterrupted, developmentally-appropriate health care services.

The transition, according to the statement, should be patient centered, flexible, responsive, and comprehensive, and should involve a coordinated effort by all parties.

This requires considering the developmental stage of the child and the family and developing a three-way partnership between the pediatric health care provider, the adult health care provider, and the child and family, Dr. Feldman said.

"We need to provide support not just to the child, but also to the family through the transition process. It’s very important as the children start to grow that we take advantage of this burgeoning autonomy and give them skills for self-management; that we coordinate our adult and pediatric services so that the transition is smooth; and that we plan for an active transfer of care. Arthritis self-management is an important aspect of this process," he said.

Arthritis self-management programs have been around for a long time, and studies consistently demonstrate that they can be of benefit for adolescents and young adults, particularly with respect to improving medication adherence.

The Canadian Arthritis Society and the Arthritis Foundation are among organizations that have long offered self management programs. A new Internet-based program, webSMART, currently in development through the Childhood Arthritis & Rheumatology Research Alliance also is showing promise.

The program, which promotes coping skills training for English-, French-, and Spanish-speaking adolescents with juvenile idiopathic arthritis, currently is being evaluated in a large, randomized, controlled, trial across North America.

The website has a "funky" design to appeal to the adolescents, and covers subjects such as nonmedical therapies, stress management, relaxation, arthritis medications, self-monitoring, and looking ahead. Each page includes videos, tips and interactive features, Dr. Feldman said.

In a pilot study, 24 teens were randomized to a group that was exposed to the program, and 22 were randomized to a control group who received a phone call each week from a counselor who would answer questions the teen had about his or her care.

Pain intensity declined significantly in the experimental group, but increased or remained the same in the control group. The difference between the groups was statistically significant, and the effect size was moderate, Dr. Feldman said.

Furthermore, knowledge about disease management increased significantly in the experimental group, compared with the control group, and this effect size was large, he noted.

"So our website was able to change not just knowledge, but also symptoms," he said, noting that while the program is "not ready for prime time," it is expected to be made available to the public once the randomized trial is complete.

Self-management programs can be ideal for many adolescents, including those who live in rural areas without easy access to rheumatologists, because they provide a unique strategy that makes the most of the unique characteristics of this population, Dr. Feldman said.

"Self management is important, and because of the unique issues we deal with in the pediatric population, we should be considering Internet strategies," he concluded.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He has received research grant support from Baxter and Bayer.

*Correction, 6/18/2013: An earlier version of this story did not include a photo of Dr. Brian Feldman of Ontario, Canada.

DESTIN, FLA. – Arthritis self-management programs can ease the transition from pediatric to adult care for many adolescents with juvenile idiopathic arthritis, according to Dr. Brian Feldman.

Not only are adolescent patients coping with rapid physical growth and pubertal changes that can have detrimental effects in patients with chronic conditions, they also are developing a personal identity and seeking independence. As a result, adolescence is a time when parental influence can disintegrate, risk-taking behaviors may increase – and medication adherence may go by the wayside, he said at the Congress of Clinical Rheumatology.

A meta-analysis involving 569 studies of adults and children with various chronic conditions showed that on average, medication adherence was 75%, but a closer look at the pediatric population shows that adherence declines substantially during the teenage years, said Dr. Feldman, professor of pediatrics and medicine at the University of Toronto, and head of the division of rheumatology at the Hospital for Sick Children, also in Toronto.

In another study of 40 juvenile arthritis patients started on NSAID treatment, only 60% took their medications as prescribed.

These issues are not new, but they have garnered increasing attention in the past decade, beginning with a 2002 consensus statement on health care transitions for young adults with special health care needs (Pediatrics 2002;110[Suppl. 3]:1304-6). The statement, developed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine stresses the importance of the transition process, and characterizes it as a dynamic lifelong process with a goal of maximizing lifelong functioning and potential through high-quality, uninterrupted, developmentally-appropriate health care services.

The transition, according to the statement, should be patient centered, flexible, responsive, and comprehensive, and should involve a coordinated effort by all parties.

This requires considering the developmental stage of the child and the family and developing a three-way partnership between the pediatric health care provider, the adult health care provider, and the child and family, Dr. Feldman said.

"We need to provide support not just to the child, but also to the family through the transition process. It’s very important as the children start to grow that we take advantage of this burgeoning autonomy and give them skills for self-management; that we coordinate our adult and pediatric services so that the transition is smooth; and that we plan for an active transfer of care. Arthritis self-management is an important aspect of this process," he said.

Arthritis self-management programs have been around for a long time, and studies consistently demonstrate that they can be of benefit for adolescents and young adults, particularly with respect to improving medication adherence.

The Canadian Arthritis Society and the Arthritis Foundation are among organizations that have long offered self management programs. A new Internet-based program, webSMART, currently in development through the Childhood Arthritis & Rheumatology Research Alliance also is showing promise.

The program, which promotes coping skills training for English-, French-, and Spanish-speaking adolescents with juvenile idiopathic arthritis, currently is being evaluated in a large, randomized, controlled, trial across North America.

The website has a "funky" design to appeal to the adolescents, and covers subjects such as nonmedical therapies, stress management, relaxation, arthritis medications, self-monitoring, and looking ahead. Each page includes videos, tips and interactive features, Dr. Feldman said.

In a pilot study, 24 teens were randomized to a group that was exposed to the program, and 22 were randomized to a control group who received a phone call each week from a counselor who would answer questions the teen had about his or her care.

Pain intensity declined significantly in the experimental group, but increased or remained the same in the control group. The difference between the groups was statistically significant, and the effect size was moderate, Dr. Feldman said.

Furthermore, knowledge about disease management increased significantly in the experimental group, compared with the control group, and this effect size was large, he noted.

"So our website was able to change not just knowledge, but also symptoms," he said, noting that while the program is "not ready for prime time," it is expected to be made available to the public once the randomized trial is complete.

Self-management programs can be ideal for many adolescents, including those who live in rural areas without easy access to rheumatologists, because they provide a unique strategy that makes the most of the unique characteristics of this population, Dr. Feldman said.

"Self management is important, and because of the unique issues we deal with in the pediatric population, we should be considering Internet strategies," he concluded.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He has received research grant support from Baxter and Bayer.

*Correction, 6/18/2013: An earlier version of this story did not include a photo of Dr. Brian Feldman of Ontario, Canada.

DESTIN, FLA. – Arthritis self-management programs can ease the transition from pediatric to adult care for many adolescents with juvenile idiopathic arthritis, according to Dr. Brian Feldman.

Not only are adolescent patients coping with rapid physical growth and pubertal changes that can have detrimental effects in patients with chronic conditions, they also are developing a personal identity and seeking independence. As a result, adolescence is a time when parental influence can disintegrate, risk-taking behaviors may increase – and medication adherence may go by the wayside, he said at the Congress of Clinical Rheumatology.

A meta-analysis involving 569 studies of adults and children with various chronic conditions showed that on average, medication adherence was 75%, but a closer look at the pediatric population shows that adherence declines substantially during the teenage years, said Dr. Feldman, professor of pediatrics and medicine at the University of Toronto, and head of the division of rheumatology at the Hospital for Sick Children, also in Toronto.

In another study of 40 juvenile arthritis patients started on NSAID treatment, only 60% took their medications as prescribed.

These issues are not new, but they have garnered increasing attention in the past decade, beginning with a 2002 consensus statement on health care transitions for young adults with special health care needs (Pediatrics 2002;110[Suppl. 3]:1304-6). The statement, developed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine stresses the importance of the transition process, and characterizes it as a dynamic lifelong process with a goal of maximizing lifelong functioning and potential through high-quality, uninterrupted, developmentally-appropriate health care services.

The transition, according to the statement, should be patient centered, flexible, responsive, and comprehensive, and should involve a coordinated effort by all parties.

This requires considering the developmental stage of the child and the family and developing a three-way partnership between the pediatric health care provider, the adult health care provider, and the child and family, Dr. Feldman said.

"We need to provide support not just to the child, but also to the family through the transition process. It’s very important as the children start to grow that we take advantage of this burgeoning autonomy and give them skills for self-management; that we coordinate our adult and pediatric services so that the transition is smooth; and that we plan for an active transfer of care. Arthritis self-management is an important aspect of this process," he said.

Arthritis self-management programs have been around for a long time, and studies consistently demonstrate that they can be of benefit for adolescents and young adults, particularly with respect to improving medication adherence.

The Canadian Arthritis Society and the Arthritis Foundation are among organizations that have long offered self management programs. A new Internet-based program, webSMART, currently in development through the Childhood Arthritis & Rheumatology Research Alliance also is showing promise.

The program, which promotes coping skills training for English-, French-, and Spanish-speaking adolescents with juvenile idiopathic arthritis, currently is being evaluated in a large, randomized, controlled, trial across North America.

The website has a "funky" design to appeal to the adolescents, and covers subjects such as nonmedical therapies, stress management, relaxation, arthritis medications, self-monitoring, and looking ahead. Each page includes videos, tips and interactive features, Dr. Feldman said.

In a pilot study, 24 teens were randomized to a group that was exposed to the program, and 22 were randomized to a control group who received a phone call each week from a counselor who would answer questions the teen had about his or her care.

Pain intensity declined significantly in the experimental group, but increased or remained the same in the control group. The difference between the groups was statistically significant, and the effect size was moderate, Dr. Feldman said.

Furthermore, knowledge about disease management increased significantly in the experimental group, compared with the control group, and this effect size was large, he noted.

"So our website was able to change not just knowledge, but also symptoms," he said, noting that while the program is "not ready for prime time," it is expected to be made available to the public once the randomized trial is complete.

Self-management programs can be ideal for many adolescents, including those who live in rural areas without easy access to rheumatologists, because they provide a unique strategy that makes the most of the unique characteristics of this population, Dr. Feldman said.

"Self management is important, and because of the unique issues we deal with in the pediatric population, we should be considering Internet strategies," he concluded.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He has received research grant support from Baxter and Bayer.

*Correction, 6/18/2013: An earlier version of this story did not include a photo of Dr. Brian Feldman of Ontario, Canada.

DESTIN, FLA. – The pediatric-to-adult rheumatologic care transition is a process that should begin early in the course of care, according to Dr. Brian Feldman.

And the process should be presented as a normative event, he said at the Congress of Clinical Rheumatology.

Findings from a 2011 quantitative and qualitative meta-analysis showed that patients prefer an approach that treats transition as a "normal part of life" because that makes the process easier, Dr. Feldman said (J. Adolesc. Health 2011; 48:429-40).

Other basic conclusions from that meta-analysis were that transitioning should involve clarifying and discussing patient expectations about the process, joint planning with the patient regarding the specific steps of transition, and provision of an optimal environment and resources for transitioning, he said.

Another paper on the transition process from the cystic fibrosis literature includes similar advice and provides additional clarification with a list of "transition best practices," said Dr. Feldman, professor of pediatrics and medicine, and senior scientist and head of the division of rheumatology at the Hospital for Sick Children, Toronto.

These best practices include:

• Starting early. "In our clinic, we start transitioning patients when they are 13, when they’re just coming into the adolescent years," he said, noting that patients cannot be seen after the age of 18 years at his center.

• Evaluating the patient without the parent. For Dr. Feldman, this also starts when patients are age 13. Patients are seen without their parents, at least for part of the visit, to help prepare them for the adult care environment where they typically won’t have a parent present during visits.

• Providing transition planning for all patients at a defined age. It’s tempting to delay transition planning until patients are deemed "ready" or "mature enough," but all patients need this, and in the meta-analysis on patient needs, pediatric patients expressed a desire for this type of expectation setting, he noted.

• Arranging for the patient to meet the adult care team prior to the transition to reduce anxiety. In his practice, Dr. Feldman arranges a visit or two with the adult care provider when a patient is 17 and preparing for transition, but still in his care. This provides a chance for the patient to make sure he or she likes the new physician, and provides a sense of familiarity once the transition occurs, he said.

• Keeping the lines of communication open. This pertains to communication between the pediatric and adult care offices to ensure a smooth transition.

• Ensuring that the patient has an ally throughout the process. "In our clinic, that’s either the nurse or the social worker who works with them as they move through this process," he said.

A 2011 systematic review shows that starting the transition early and adhering to best practices really does provide benefits for the patient. In six of the studies included in the review, the programs and practices that were found to be of particular benefit included disease-specific education programs, generic education and skills training, availability of a transition coordinator, joint pediatric and adult clinic services, and separate young adult clinic services that can serve as an intermediate step toward adult care, he said.

Among other factors that Dr. Feldman said he has found useful in his practice are the use of a self-assessment questionnaire at every visit starting at age 13. This encourages patients to know and understand their diagnosis and health status (they are asked about their last eye examination, for example) and to be able to discuss their symptoms and medications. Patients also are asked at the end of each visit to write down what was discussed and what the plan is going forward, and Dr. Feldman completes a transition readiness assessment.

Adolescent patients complete a health screen to identify areas that may need attention in the adolescent medicine clinic or from a social worker, and at age 17, patients are asked to fill out another questionnaire about their transition process to ensure they understand the process, know the name of their new physician, and know what is needed and expected of them during the process.

Considering the transition as a process that begins early will help ensure that patients arrive at the adult care setting armed with the knowledge they need to successfully participate in the management of their care, he said.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He said he has received research grant support from Baxter and Bayer.

DESTIN, FLA. – The pediatric-to-adult rheumatologic care transition is a process that should begin early in the course of care, according to Dr. Brian Feldman.

And the process should be presented as a normative event, he said at the Congress of Clinical Rheumatology.

Findings from a 2011 quantitative and qualitative meta-analysis showed that patients prefer an approach that treats transition as a "normal part of life" because that makes the process easier, Dr. Feldman said (J. Adolesc. Health 2011; 48:429-40).

Other basic conclusions from that meta-analysis were that transitioning should involve clarifying and discussing patient expectations about the process, joint planning with the patient regarding the specific steps of transition, and provision of an optimal environment and resources for transitioning, he said.

Another paper on the transition process from the cystic fibrosis literature includes similar advice and provides additional clarification with a list of "transition best practices," said Dr. Feldman, professor of pediatrics and medicine, and senior scientist and head of the division of rheumatology at the Hospital for Sick Children, Toronto.

These best practices include:

• Starting early. "In our clinic, we start transitioning patients when they are 13, when they’re just coming into the adolescent years," he said, noting that patients cannot be seen after the age of 18 years at his center.

• Evaluating the patient without the parent. For Dr. Feldman, this also starts when patients are age 13. Patients are seen without their parents, at least for part of the visit, to help prepare them for the adult care environment where they typically won’t have a parent present during visits.

• Providing transition planning for all patients at a defined age. It’s tempting to delay transition planning until patients are deemed "ready" or "mature enough," but all patients need this, and in the meta-analysis on patient needs, pediatric patients expressed a desire for this type of expectation setting, he noted.

• Arranging for the patient to meet the adult care team prior to the transition to reduce anxiety. In his practice, Dr. Feldman arranges a visit or two with the adult care provider when a patient is 17 and preparing for transition, but still in his care. This provides a chance for the patient to make sure he or she likes the new physician, and provides a sense of familiarity once the transition occurs, he said.

• Keeping the lines of communication open. This pertains to communication between the pediatric and adult care offices to ensure a smooth transition.

• Ensuring that the patient has an ally throughout the process. "In our clinic, that’s either the nurse or the social worker who works with them as they move through this process," he said.

A 2011 systematic review shows that starting the transition early and adhering to best practices really does provide benefits for the patient. In six of the studies included in the review, the programs and practices that were found to be of particular benefit included disease-specific education programs, generic education and skills training, availability of a transition coordinator, joint pediatric and adult clinic services, and separate young adult clinic services that can serve as an intermediate step toward adult care, he said.

Among other factors that Dr. Feldman said he has found useful in his practice are the use of a self-assessment questionnaire at every visit starting at age 13. This encourages patients to know and understand their diagnosis and health status (they are asked about their last eye examination, for example) and to be able to discuss their symptoms and medications. Patients also are asked at the end of each visit to write down what was discussed and what the plan is going forward, and Dr. Feldman completes a transition readiness assessment.

Adolescent patients complete a health screen to identify areas that may need attention in the adolescent medicine clinic or from a social worker, and at age 17, patients are asked to fill out another questionnaire about their transition process to ensure they understand the process, know the name of their new physician, and know what is needed and expected of them during the process.

Considering the transition as a process that begins early will help ensure that patients arrive at the adult care setting armed with the knowledge they need to successfully participate in the management of their care, he said.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He said he has received research grant support from Baxter and Bayer.

DESTIN, FLA. – The pediatric-to-adult rheumatologic care transition is a process that should begin early in the course of care, according to Dr. Brian Feldman.

And the process should be presented as a normative event, he said at the Congress of Clinical Rheumatology.

Findings from a 2011 quantitative and qualitative meta-analysis showed that patients prefer an approach that treats transition as a "normal part of life" because that makes the process easier, Dr. Feldman said (J. Adolesc. Health 2011; 48:429-40).

Other basic conclusions from that meta-analysis were that transitioning should involve clarifying and discussing patient expectations about the process, joint planning with the patient regarding the specific steps of transition, and provision of an optimal environment and resources for transitioning, he said.

Another paper on the transition process from the cystic fibrosis literature includes similar advice and provides additional clarification with a list of "transition best practices," said Dr. Feldman, professor of pediatrics and medicine, and senior scientist and head of the division of rheumatology at the Hospital for Sick Children, Toronto.

These best practices include:

• Starting early. "In our clinic, we start transitioning patients when they are 13, when they’re just coming into the adolescent years," he said, noting that patients cannot be seen after the age of 18 years at his center.

• Evaluating the patient without the parent. For Dr. Feldman, this also starts when patients are age 13. Patients are seen without their parents, at least for part of the visit, to help prepare them for the adult care environment where they typically won’t have a parent present during visits.

• Providing transition planning for all patients at a defined age. It’s tempting to delay transition planning until patients are deemed "ready" or "mature enough," but all patients need this, and in the meta-analysis on patient needs, pediatric patients expressed a desire for this type of expectation setting, he noted.

• Arranging for the patient to meet the adult care team prior to the transition to reduce anxiety. In his practice, Dr. Feldman arranges a visit or two with the adult care provider when a patient is 17 and preparing for transition, but still in his care. This provides a chance for the patient to make sure he or she likes the new physician, and provides a sense of familiarity once the transition occurs, he said.

• Keeping the lines of communication open. This pertains to communication between the pediatric and adult care offices to ensure a smooth transition.

• Ensuring that the patient has an ally throughout the process. "In our clinic, that’s either the nurse or the social worker who works with them as they move through this process," he said.

A 2011 systematic review shows that starting the transition early and adhering to best practices really does provide benefits for the patient. In six of the studies included in the review, the programs and practices that were found to be of particular benefit included disease-specific education programs, generic education and skills training, availability of a transition coordinator, joint pediatric and adult clinic services, and separate young adult clinic services that can serve as an intermediate step toward adult care, he said.

Among other factors that Dr. Feldman said he has found useful in his practice are the use of a self-assessment questionnaire at every visit starting at age 13. This encourages patients to know and understand their diagnosis and health status (they are asked about their last eye examination, for example) and to be able to discuss their symptoms and medications. Patients also are asked at the end of each visit to write down what was discussed and what the plan is going forward, and Dr. Feldman completes a transition readiness assessment.

Adolescent patients complete a health screen to identify areas that may need attention in the adolescent medicine clinic or from a social worker, and at age 17, patients are asked to fill out another questionnaire about their transition process to ensure they understand the process, know the name of their new physician, and know what is needed and expected of them during the process.

Considering the transition as a process that begins early will help ensure that patients arrive at the adult care setting armed with the knowledge they need to successfully participate in the management of their care, he said.

Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He said he has received research grant support from Baxter and Bayer.