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41 PREVALENCE AND ETIOLOGY OF OSTEOPOROSIS IN PEDIATRIC SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) Sandrine Compeyrot, Pascal Tyrrell, Susanne Benseler, Eshetu Atenafu, David Gilday, Derek Stephens, Earl D. Silverman (Division of Rheumatology, the Hospital for Sick Children, Toronto, Canada, Population Health Sciences, the Hospital for Sick Children, Toronto, Canada , Diagnostic Imaging, the Hospital for Sick Children, Toronto, Canada) Purposes: 1) To determine the prevalence of osteoporosis in patients with pediatric SLE and 2) To investigate the role of clinical features, immunosuppressive and steroid requirement on the development of osteoporosis. Methods: A single center retrospective cohort study of 64 patients diagnosed at the Hospital for Sick Children Hospital with pediatric SLE between 1990 and 2002 was performed. All patients had a dual-energy X-ray absorptiometry (DEXA) scan. The BMD results were corrected for bone age and were expressed as Z-score for lumbar spine (abnormal < -1) and as percentage for hip (abnormal < 90%). Data for disease activity (SLEDAI, ECLAM, SLEDAI area under the curve), sex, age at the time of diagnosis, age at DEXA, steroid therapy (cumulative dose of steroid, duration of steroid treatment), requirement of other medications (methotrexate, cyclophosphamide, hydroxychloroquine, cyclosporin, MMF and azathioprine), duration of therapies, clinical features (renal involvement including WHO classification, CNS involvement, arthritis, serositis and cutaneous involvement), osteoporosis complications (vertebral fractures) and puberty status were collected at the time of the DEXA and analysed. Pearson correlation tests were used for the univariate analysis and then statistically significant variables were entered into a stepwise linear regression for the multivariate analysis. Results: 30 (46.9%) patients had an abnormal BMD at the lumbar spine < -1 and 28 patients (43.7%) an abnormal BMD at hip < 90%. The univariate analysis showed a significant correlation between BMD at lumbar spine and age at DEXA (p=0.0028), disease duration (p=0.0001), duration of steroid requirement (p=0.0004), cumulative steroid dose (p=0.0002), azathioprine requirement (p=0.0021), and duration of azathioprine therapy (p=0.0006). Decreased BMD at lumbar spine was correlated with the presence of lupus glomerulonephritis (p=0.0188) but not WHO classification. The multivariate analysis showed a significant correlation between cumulative steroid dose (p=0.0035) and azathioprine requirement (p=0.0436) only. All models required cumulative dose of steroid suggesting that cumulative steroid was the main factor involved in osteoporosis. Only 2 patients, with very low BMD (-3.68 and -3.7), had vertebral fractures suggesting that fractures were an uncommon complication in our cohort. Conclusion: Osteoporosis was a long-term complication of pediatric SLE. Multivariant analysis revealed that only cumulative steroid and azathioprine use altered BMD. However, cumulative steroid dose and azathioprine usage may be markers of disease severity. Further studies are required to determine the contribution of disease severity and cumulative steroid dose to abnormal BMD in pediatric SLE.
42 IMPACT OF THE WHI STUDY ON ESTROGEN/PROGESTERONE - RELATED HEALTH ISSUES IN POSTMENOPAUSAL WOMEN WITH OSTEOPOROSIS/ OSTEOPENIA Emily Lai, Gillian Hawker, Heather McDonald-Blumer (University of British Columbia, University of Toronto and Sunnybrook & Women's College Health Science Centre) The Women's Health Initiative (WHI), published in July of 2002, quickly and dramatically changed the perceived role of estrogen and progesterone therapy in post-menopausal women. The mainstream media attention that was placed on this study was overwhelming. At the Multidisciplinary Osteoporosis Program at the Women's College Campus of Sunnybrook & Women's College Health Science Centre, our anecdotal experience has been that almost every woman on estrogen, with or without progesterone (from hereon, referred to as hormonal therapy), at least considered stopping her therapy. We wanted to document the decisions of the women in our program since the publication of the WHI study, and their reasons for continuing or discontinuing their hormonal therapy. We also wanted to determine the possible impact of the WHI on their decision to continue or discontinue therapy. METHODS: Data collection was performed over 4 weeks in August/September 2003. Charts of all women that attended a Multidisciplinary Osteoporosis Program session in January or February 2003 were reviewed. Women between the ages of 50 and 65 years and on estrogen, with or without progesterone, during the months up to and including July 2002, were administered a standardized telephone questionnaire. Women were asked about their initial reasons for starting hormonal therapy. They were then stratified according to whether they were still on hormonal therapy at the time of the interview and whether they had attempted to discontinue hormonal therapy previously. Reasons for continuing or discontinuing hormonal therapy, how they felt about their decision, as well as any change in their medical status or therapy since their decision were documented. The women were also asked about their primary sources of health information and, if they had heard of the WHI study, were asked about their understanding of the results. RESULTS: Of 292 patients seen in the Multidisciplinary Osteoporosis Program in January and February 2003, 38 women met our inclusion criteria. Of the 33 women (87%) who were located and consented to participate in our study, 15 women (45%) elected to continue their hormonal therapy and 18 women (55%) elected to discontinue therapy. Of the 15 women who decided to continue with hormonal therapy, 9 (60%) were on a combined estrogen/progesterone regimen. Whether they continued or discontinued hormonal therapy, the majority of women (73%) felt they had made the right decision. While very few women were familiar with the exact name of the WHI study, the majority of women were aware of the publication of an estrogen/progesterone therapy study. Only 4 women (12%) were unaware that such a study was published. Of the 18 women who decided to discontinue hormonal therapy, they ranked new study information as an important influence on their decision to stop therapy. CONCLUSION: Less women than expected discontinued their hormonal therapy since the publication of the WHI study. However, of those women who did discontinue their hormonal therapy, the majority of women listed the new WHI data as an important influence on their decision. 43 TOPICAL TACROLIMUS FOR THE TREATMENT OF THE CUTANEOUS MANIFESTATIONS OF JUVENILE DERMATOMYOSITIS Bianca Lang, Adam Huber, Suzanne Ramsey, Laura Finlayson (Dalhousie University, Halifax, Nova Scotia) Aim of Study: Topical tacrolimus is a locally immunomodulatory agent which has been used in various inflammatory skin conditions. The aim of this study is to describe our experience in 3 patients with juvenile dermatomyositis (JDM). Patients and Methods: Three JDM patients with classic skin rash were treated with tacrolimus ointment (0.03-0.1%) which was applied to affected areas twice daily. None received concurrent topical steroids or had increased systemic therapy in the previous 3 months. Patient 1, a 15 year old girl with JDM since age 4, had inactive muscle disease but severe, persistent rash refractory to steroids, hydroxychloroquine and methotrexate. Patient 2, a 9 year old boy with JDM since age 3, had inactive muscle disease but a recent, isolated flare of skin rash despite systemic therapy. Patient 3, a 3 year old boy with new onset JDM, had classic rash without evidence of myositis. Effectiveness of treatment was measured by means of patient/parent report and physical examination. Summary of Results: Patient 1 had resolution or marked improvement in all areas of rash after 4 weeks. This response was sustained with continued treatment up to 9 months, however a relapse occurred with tapering at 12 months. Patient 2 had marked improvement after 7 weeks which was sustained for the duration of therapy and at 12 month follow-up. Patient 3 had no improvement after approximately 8 weeks and started systemic therapy after the new onset of active myositis several months later. No adverse effects were noted in any patients. Conclusion: Topical tacrolimus may be very effective in some JDM patients with rash unresponsive to systemic therapy. However, its effect is variable and relapse may occur with tapering. Future studies are needed to determine which patients are likely to benefit. 44 AN ANALOG STUDY OF EXAGGERATED PAIN AND DISABILITY IN FIBROMYALGIA Judy Le Page, Grant Iverson, Barry Koehler, Kam Shojania, Maziar Badii (University of British Columbia, University of British Columbia and Riverview Hospital, Arthritis Research Centre of Canada) The purpose of this study was to examine the phenomenology of exaggeration and the deliberate portrayal of excessive disability in patients with Fibromyalgia (FM). Fifty-four patients from two private rheumatology practises, and one outpatient hospital program participated in the study. Participants underwent a comprehensive evaluation by a rheumatologist. Those who met the American College of Rheumatology criteria for FM and did not possess any significant co-existing rheumatic diseases were included in the study. Participants completed a measure of functioning and disability (Oswestry Disability Questionnaire), a measure of clinical depression (Beck Depression Inventory - Second Edition), and a test designed to detect exaggerated memory impairment (Test of Memory Malingering) twice. An analog, within subjects, counter-balanced design was used. In one session, participants were instructed to complete the tests and measures "carefully and honestly", in a manner that was "normal"; for them. In the other session, participants were instructed to "exaggerate" pain and disability associated with FM. In the exaggeration condition, the patients endorsed much more severe depression (p < .00001, d = 1.1, very large effect) and disability (p < .00001, d = 1.1, very large effect). Most participants did not appear to exaggerate on the test for malingered memory impairment. Although there were large differences in patients' self-reports across experimental conditions for depression and disability, we were unable to differentiate the honest from the exaggeration condition using discriminant function analyses or various combinations of test score cutoffs without yielding substantial numbers of false positives and false negatives. These findings suggest that patients with FM can exaggerate their disability on self-report measures in a plausible manner. 45 FIBROMYALGIA AND MEDICAL EXPERT CREDIBILITY IN THE CANADIAN COURTS Judy Le Page, Peter Collins, Barry Koehler, Christian Maile, Jordan Maile, Grant Iverson (University of British Columbia, Harris, Brun, Vancouver, University of British Columbia , University of British Columbia and Riverview Hospital) Plaintiff and medical expert credibility is paramount in disability and tort litigation involving poorly understood medical conditions. The current project examines issues of plaintiff and expert credibility and other factors involved in determining the credibility of Fibromyalgia (FM) within the courts. A careful and systematic review was performed of every trial-by-judge alone (without jury), litigated FM claim in Canada up to 2003. The Quicklaw (2001) database was searched and only those judgments involving awards sought for FM at initial trial were included in the final data pool (N = 196). Judgments that did not involve actions for FM awards were excluded (e.g., appeals, motions, applications). The cases have been systematically reviewed to address a number of issues, including demographic, medical, liability, and credibility factors. Credibility was measured through a coding scheme reflecting judge's level of agreement with specific sources of information (e.g., plaintiff or medical expert). The majority of plaintiffs were women (84%), their mean age was 42 years, and the majority of the cases were tried in British Columbia (62%). Surveillance evidence reportedly was used in 17% of cases. A rheumatologist provided the initial diagnosis for 48% of the cases, followed by 22% by the family doctor. FM was preceded by an injury or illness in 90% of the cases. In regards to credibility, judges' perceptions of plaintiff credibility clearly were related to the amount of award granted [F(2,183) = 11.8, p < .0001]. Those rated as most credible received awards an average of 18 times greater than those rated as least credible. Preliminary analyses, based on 52 trials, have been done relating to expert evidence. Most family physicians testifying for the plaintiff were rated as partially or very credible (19/22), although two physicians received zero credibility ratings. No rheumatologist testifying for the plaintiff (0/31) received a zero credibility rating, whereas three rheumatologists testifying for the defense (3/13) received a zero credibility rating. Greater financial awards were received by plaintiffs whose rheumatologist received the highest credibility rating (p < .04). There was a trend toward lower awards for plaintiffs when the defense rheumatologist received the highest credibility ratings, however the sample size was too small for meaningful analyses. Additional analyses, based on the entire sample, will be done to examine differences in credibility ratings among medical experts and the relations between credibility ratings and awards granted. 46 THE PREVALENCE OF PULMONARY ARTERIAL HYPERTENSION IN A LARGE CANADIAN MULTI-CENTER COHORT OF SYSTEMIC SCLEROSIS SUBJECTS Janet E. Pope, Peter Lee, Murray Baron, James Dunne, Douglas Smith, Peter S. Docherty, Arthur A.M. Bookman, Maysan Abu-Hakima (St-Joseph's Health Centre, University of Western Ontario, London, Ontario, Mont Sinai Hospital, University of Toronto, Toronto, Ontario, Jewish General Hospital, McGill University, Montreal, Quebec, St-Pauls Hospital, University of British Columbia, Vancouver, British Columbia, The Ottawa Hospital, University of Ottawa, Ottawa, Ontario, The Moncton Hospital, Moncton, New Brunswick, Toronto Western Hospital/UHN, University of Toronto, Toronto, Ontario, Rockyview Professional Centre, University of Calgary, Calgary, Alberta) Objective: To estimate the prevalence of pulmonary arterial hypertension (PAH) in systemic sclerosis (SSc) patients in Canada. Methods: After approval of local institutional review boards, SSc patients alive as of June 2002 had their charts reviewed to determine demographics, SSc characteristics and percentage of patients with a PAH diagnosis. For the PAH patients, available test results (including PFT, echo, X-ray, antibodies, cardiac catheterization) were recorded. Patients not previously identified as having PAH who had not had an echocardiogram performed after December 2001 were screened for symptoms of dyspnea and fatigue. Patients that had some degree of fatigue and/or dyspnea were invited to undergo a Doppler echocardiography to estimate their systolic pulmonary artery pressure (sPAP). Results: A total of 539 SSc patients (56 yrs±13 SD, 84% female, 41% diffuse SSc, 58% limited SSc, 9 yrs ±7 SD SSc disease duration) at 8 rheumatology centers were reviewed. From this cohort 43% had not been screened by echocardiography since the time of their SSc diagnosis. Twenty three percent of the patients were diagnosed with PAH based on the site diagnosis criteria. Out of the 8 centers 63% used echo results for the diagnosis and 37% used both echo and right heart catheterization results. From the PAH patient charts reviewed 53% had limited SSc, 47% diffuse SSc, 56% had a history of digital ulcers, 89% of those tested had abnormal DLCO with 58% < 60% of predicted. From the 237 non PAH, not recently screened patients who were assessed for symptoms, 122 had dyspnea and/ or fatigue. A total of 89 symptomatic patients underwent an echocardiograph from which 40% had sPAP/RVSP >35mmHg with 8 patients results >45mmHg and one >60mmHg. Four patients with abnormal sPAP had reports of RV enlargement. Conclusion: PAH is common in both limited and diffuse scleroderma and occurs in 21% of limited and 26% of diffuse SSc. During the screening most patients had mild PAH that would require further assessments such as right heart catheterization to confirm the diagnosis. A high index of suspicion is important and routine echos will allow earlier diagnosis and intervention. 47 TREATMENTS PROVIDED BY RHEUMATOLOGY PRIMARY THERAPISTS FOR MANAGING RHEUMATOID ARTHRITIS Linda Li, Aileen Davis, Peter Coyte, Sydney Lineker, Claire Bombardier ((1)University Health Network; The Arthritis Society, (2)Toronto Rehabilitation Institute, (3)University of Toronto, (4)The Arthritis Society, (5)University Health Network; Institute for Work & Health; University of Toronto, Toronto, ON) Purpose: The primary therapist model (PTM) was introduced in the mid-90s to improve the efficiency in delivering rehabilitation service to patients with arthritis. Under the PTM, rheumatology trained rehabilitation therapists, regardless of their disciplinary background, provide both physical therapy (PT) and occupational therapy (OT). The goal of this project was to describe the treatment used for managing rheumatoid arthritis (RA) as reported by primary therapists. Methods: Within the context of a randomized controlled trial, 72 patients with RA, who were recruited from rheumatology practices, were randomly assigned to receive treatment from a primary therapist. The average length of treatment was 6 weeks. Eligible patients were those with a physician diagnosis of RA, who required rehabilitation treatment as identified by the referring rheumatologist, and who were ≥ 18 years of age. All treating therapists were asked to complete a log documenting all the treatment provided after each visit. Frequently used treatments were summarized using descriptive statistics. Results: 20 therapists participated in the study (PT background = 15, OT background = 5). Of the 72 patients, 9 dropped out after the baseline assessment, leaving 63 completed the treatment (44 from a PT-trained primary therapist, 19 with an OT-trained primary therapist). The mean age of patients was 54.2 years (SD=14.3), with average disease duration of 10.6 years (SD=11.4). 87.3% were female and 75.5% were in ACR functional class II or III. 62 (98.4%) of the therapist logs were returned. Range of motion exercise (90.3%) and education on disease management (88.7%) were the most frequently used treatments. Further, 58% of the patients were provided with splints and 37% received mobility aids and assistive devices. Only 14.5% (n = 9) of the patients required a cross-disciplinary referral. Conclusion: Treatment provided by primary therapists focused mainly on education and exercise. Only few patients required a referral to another rehabilitation discipline, indicating primary therapists were able to fulfill the roles of both OT and PT.
48 THE EFFECT OF THE PRIMARY THERAPIST MODEL FOR THE MANAGEMENT OF RHEUMATOID ARTHRITIS: A RANDOMIZED CONTROLLED TRIAL Linda Li, Aileen Davis, Peter Coyte, Sydney Lineker, Claire Bombardier ((1)University Health Network; The Arthritis Society, (2)Toronto Rehabilitation Institute, (3)University of Toronto, (4)The Arthritis Society, (5)University Health Network; Institute for Work & Health; University of Toronto, Toronto, ON) Purpose: Compare primary therapist model (PTM), provided by a single rheumatology-trained primary therapist, to traditional treatment (TT) model, provided by a physical therapy (PT) and/or occupational therapy (OT) generalist, for managing patients with rheumatoid arthritis (RA). Methods: Between November 1999 and May 2002, 143 patients with RA were randomized to the PTM or TT group. Eligible patients were adults requiring rehabilitation treatment and not receiving PT/OT in the past 2 years. Average length of treatment was 6 weeks. Primary outcome was defined as the proportion of patients who experienced a 20% or greater improvement in 2 of the following 3 measures from baseline to 6 months: Health Assessment Questionnaire (HAQ) disability index, HAQ pain index, and ACREU RA Knowledge Questionnaire. Chi-square analysis compared proportion of clinical responders and one-way ANOVA assessed individual measures across time (baseline, discharge, 6 months). Results: From 143 consenting patients, 32 dropped out after baseline assessment, leaving 111 for analysis (PTM=63, TT=48). Majority female (PTM=87.3%, TT=79.2%), with mean age of 54.2 years and 56.8 years for PTM and TT groups, respectively. Average disease duration was 10.6 years and 13.2 years for each group, respectively. At 6 months, 44.4% of patients in PTM group were clinical responders versus 18.8% in TT group (chi square=8.09, p=0.004). Statistically significant improvement was found in pain (PTM: baseline=6.9 (SD=2.4), discharge=5.8 (SD=2.5), 6 months=5.7 (SD=2.7); F(2,174), p=0.03; TT: baseline=6.8 (SD=2.3), discharge=5.8 (SD=2.3), 6 months=5.6 (SD=2.4); F(2,130), p=0.03). Conclusion: PTM may be a viable alternative to the traditional PT/OT model. Future research should compare cost-effectiveness of the models. 49 READINESS FOR SELF-MANAGEMENT: PLANNING AN EDUCATIONAL PROGRAM FOR PATIENTS WITH ARTHRITIS. Sydney Lineker, Carol Kennedy, Dorcas Beaton, Rachel Shupak, Elizabeth Badley, Susan Ross (The Arthritis Society, Toronto, ON, St. Michael's Hospital, Toronto, ON, University Health Network, Toronto, ON) A patient's readiness for change has been shown to be associated with successful adoption of health behaviours. Educational endeavours that attempt to change health behaviours have the best results when geared towards the patient's stage of change. Little is known if one's readiness for change predicts self-management of arthritis. The purpose of this study was to determine stages of change in a group of patients eligible for education programs at a tertiary level arthritis centre and to identify factors associated with the various stages of change. Methods: A convenience sample of 217 persons attending an outpatient rheumatology clinic or being seen by home therapy in this clinic's catchment area participated in the study. The questionnaire package included a single item to identify readiness for change, demographic information, severity ratings (pain and disease), measures of burden of disease [Health Assessment Questionnaire (HAQ), Illness Intrusiveness scale (II), Skaff loss of self], self efficacy (SE) for pain (SE-P) and coping (SE-C) and knowledge about arthritis. Previous exposure to recommended educational material was assessed. Analysis: Descriptive summaries for each variable were calculated. ANOVA (with Duncan's multiple tests) or Chi-square analysis was used to test for differences across the stages of readiness to engage. Significance was based at a p<0.05. Results: Mean age of participants was 56 years (19 to 92). 71% were female, 68% had university education and most were not working (56%). Most had OA or RA with mean duration of 13 years (sd 11). Mean ratings of pain severity and arthritis severity were 48/100 and 3.9/7 respectively. 4% of patients were at the precontemplation (PC) stage, 21% at contemplation (C), 30% at the prepared for action stage (PA) and 46% at the action/maintenance stage (AM). PC had higher mean pain severity (66.3/100) and arthritis severity (5.4/7), HAQ (mean 1.7/3) and II (subscale: Relationships & personal development mean 3.4/7) scores and lower SE (mean SE-P 35.4 and SE-C 40.3/100) than those in the C, PA and AM stages. Across the stages from C to AM there was a gradient of decreasing pain and arthritis severity, HAQ and II and increasing SE. AM had lower loss of self (mean 1.8/4) than C and PA (Tukey's test). C, PA and AM had higher education levels than PC. No significant differences were found for: gender, age, duration of disease, work status, arthritis type, knowledge about arthritis and previous exposure to recommended educational material. Conclusions: Patients were in various stages of readiness to assume self-management strategies for their arthritis. Several factors were found to be associated with the stage of change. These findings will help us to target content and format for a future educational program. Readiness for self-management stage could be integrated into an education program by targeting the right type of delivery for the stage. For example, different pamphlets would be graded to precontemplators versus those actively managing. This could be a more effective means of facilitating learning and self-management. 50 WORK ROLE LIMITATIONS IN EMPLOYED PATIENTS WITH RHEUMATOID ARTHRITIS (RA) X. Li, A. Maetzel, L. C. Li, J. Pencharz, L. Maguire, C. Bombardier, CHAP team (CDMHC, University Health Network Research Institute, Toronto) Objective: To describe the work role limitations in employed patients with RA and analyze how they are influenced by health status. Methods: In a cross-sectional, community-based study, 53 rheumatologists recruited consecutive patients with RA. A total of 253 patients were interviewed at baseline and 3-months for patient demographics, health and functional status using the Health Assessment Questionnaire (HAQ), as well as work role functioning using the Work Limitations Questionnaire (WL-26). The WL-26 includes 5 scales: 1) work scheduling demand scale captures the worker's needs to manage the workday from beginning to end, 2) physical demand scale measures a range of dynamic and static physical loads, 3) mental demand scale assesses work-related cognitive requirements, 4) social demand scale assesses the interaction of people in the workplace and 5) output demands scale assesses whether the work is completed on time, with everyone's (including the worker's) satisfaction. Item scores are average for each scale and rescaled to a score ranging from 0 (not limited) to 100 (limited all the time). Each scale score is interpreted as the percentage of time that a person was limited in each of the five demands in their job during the previous 4 weeks. Results: Of the 253 patients, 103 (41%) patients were employed full or part time, 27(15%) were retired, and 48 (23%) received disability or other pensions. Of the 103 employed patients who were administered the WL-26, 76% were women, mean age was 47.9 (SD 10.2) years, mean disease duration was 9.6 (SD 7.8), and 83% were high school graduates or higher. The mean HAQ disability index (0:best, 3:worst) was 0.9 (SD 0.6). About one-third of employed patients reported taking time off work during a 6-month period, with a mean of 16 days off work because of health problems over the previous 6 months. The results of WL-26 score are presented in Table 1.
Conclusion: Work limitation, mostly due to physical demands, is still present, even in patients who are employed full or part time. On-the job performance problems and limitations are related to the functional status of patients with RA and could potentially be addressed in work-modification interventions.
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