Mind the Gap: A Longitudinal Analysis of the Experiences of Adolescents and Parents in a Rheumatology Transition Clinic.

BACKGROUND: The transition from pediatric to adult care is a critical time when adolescent patients and their families face many challenges. This period can be associated with an increase in disease-related morbidity and mortality. The aim of our study is to identify gaps in transition-related care to help guide areas for improvement. METHODS: Patients (14-19 years) with juvenile idiopathic arthritis or systemic lupus erythematosus and one of their parents were recruited from the McMaster Rheumatology Transition Clinic. Both were asked to complete the Mind the Gap questionnaire, a validated tool to assess experience and satisfaction with transition care in a clinic setting. The questionnaire, addressing 3 important domains of care: management of the environment, provider characteristics, and process issues, was completed twice-once based on their current clinical experience and again based on their ideal clinical encounter. Positive scores suggest current care is less than ideal; negative scores suggest current care exceeds the ideal experience. RESULTS: Most patients (n = 65, 68% female) had a diagnosis of juvenile idiopathic arthritis (87%). Patients identified mean gap scores between 0.2 and 0.3 for each domain of Mind the Gap, with female patients having higher gap scores compared with male patients. Parents (n = 51) identified gap scores between 0.0 and 0.3. Patients identified process issues as having the largest gap, whereas parents identified management of the environment as having the largest gap. CONCLUSIONS: We identified several gaps in transition clinic care relative to what patients and parents identify as ideal. These can be used to improve the rheumatology transition care that is currently being provided.

Measuring the Impact of MyLupusGuide in Canada: Results of a Randomized Controlled Study.

OBJECTIVE: This study was undertaken to assess the effects of a web-based program, MyLupusGuide, developed to facilitate self-management in systemic lupus erythematosus (SLE). METHODS: In this randomized controlled online study, participants received either immediate access to the MyLupusGuide site or delayed access starting on month 3. The primary outcome was the patient activation measure (PAM) score. Secondary outcomes included measurements of health status, self-efficacy, coping, perceived patient-physician relationship, and medication adherence. Outcomes were measured at the baseline visit and at the 3-month and 6-month follow-up visits. We used linear mixed modeling to compare PAM scores between the 2 groups at months 3 and 6. RESULTS: There were 541 participants included in this study. The mean ± SE age was 50 ± 14 years; 93% were female and 74% were White. The mean ± SE disease duration was 17 ± 12 years, and 56% visited MyLupusGuide at least once. The baseline mean ± SE PAM score was 61.2 ± 13, with 36% scoring low for perceived self-management skills. After 3 months of exposure to MyLupusGuide, there were no differences in terms of PAM scores between groups. In exploratory analyses, we found significant improvement in PAM scores in those who had low PAM scores at baseline and in male individuals. We observed significant improvements in self-efficacy before and after access to MyLupusGuide and delayed improvements at month 6 compared to month 3 in terms of mental health and emotional coping. CONCLUSION: MyLupusGuide increases self-efficacy but not patient activation. A total of 56% of participants visited the MyLupusGuide site during the study period. Individuals with lupus need support to become activated toward self-management behaviors.

Self-Reported Transition Readiness of Adolescent Patients with Rheumatic Disease: Do the Parents Agree?

Our objective was to compare transition readiness assessment scores from adolescents with rheumatic disease with their parents and analyze their level of agreement. We found that adolescents and parents generally agree on the level of the transition readiness; however, there is occasional disagreement in specific domains.

Challenges of Perceived Self-Management in Lupus.

OBJECTIVE: Systemic lupus erythematosus is a chronic autoimmune disease with varied and unpredictable levels of disease activity. The ability to self-manage lupus is important in controlling disease activity. Our objective was to determine levels of patient activation toward self-management in lupus. METHODS: We used baseline results from the MyLupusGuide study, which had recruited 541 lupus patients from 10 lupus centers. We used the Patient Activation Measure (PAM), a validated self-reported tool designed to measure activation toward self-management ability, as our primary variable and examined its association with demographic, disease-related, patient-provider communication and psychosocial variables captured in our study protocol. Univariable and multivariable linear regressions were performed using linear mixed models, with a random effect for centers. RESULTS: The mean ± SD age of participants was 50 ± 14 years, 93% were female, 74% were White, and the mean ± SD disease duration was 17 ± 12 years. The mean ± SD PAM score was 61.2 ± 13.5, with 36% of participants scoring in the 2 lower levels, indicating low activation. Variables associated with low activation included being single, having lower physical health status, lower self-reported disease activity, lower self-efficacy, use of more emotional coping and fewer distraction and instrumental coping strategies, and a perceived lack of clarity in patient-doctor communication. CONCLUSION: Low patient activation was observed in more than one-third of lupus patients, indicating that a large proportion of patients perceived that they are lacking in lupus self-management skills. These results highlight a modifiable gap in perceived self-management ability among patients with lupus.

Transition Readiness in Adolescents With Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: The transition from pediatric to adult rheumatology care represents a particularly vulnerable time for patients with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE). Improving self-management skills is important in optimizing health care transition. The study's objectives were to 1) examine variability in transition readiness of adolescents and young adults within and between different ages, sexes, and disease types; 2) determine the association between age and transition readiness; and 3) identify specific challenges to transition readiness for adolescents. METHODS: Over 1 year, patients 14 to 20 years of age with JIA or cSLE were recruited from pediatric transition and young adult clinics at a single academic institution. Participants completed the 14-item Transition-Q at a single time point. Total scores range from 0 to 100; higher scores indicate greater health care self-management skills as a proxy for transition readiness. Descriptive statistics summarized patient characteristics and Transition-Q scores for the population. Regression analyses determined the association between age, sex, and disease type and Transition-Q score. RESULTS: Among 70 participants, 61 had JIA and 9 cSLE (mean disease duration 4.6 years). The mean (SD) total Transition-Q score was 59.8 (14.9). Age was significantly associated with Transition-Q score (standardized ß = 0.372l P = 0.002). The most commonly reported challenges were seeing the physician alone (without parents), making one's own appointments, picking up prescriptions, and independent transportation for appointments. CONCLUSION: Transition readiness appears to increase with patient age. There is significant variability in Transition-Q scores between patients of the same age, suggesting that an individualized approach to improving self-management skills is necessary.

Factors that influence Canadian internal medicine residents' choice to pursue a rheumatology career.

In Canada, little is known about residents' self-confidence to diagnose/treat musculoskeletal (MSK) disease and factors affecting pursuit of a rheumatology career. Our study explored these factors. An online survey (descriptive cross-sectional design) was distributed to Canadian postgraduate year (PGY) 1 and 2 internal medicine (IM) residents. Questions probed self-confidence in rheumatology and factors influencing subspecialty career choice. Frequencies were determined and responses compared between PGY-1 and PGY-2 using univariate statistical analyses. Fifty-four IM residents completed the survey. PGY-2 residents were statistically more certain in subspecialty decidedness and had higher levels of self-confidence to diagnose/treat MSK disease and perform a physical exam. "Quality of life" was the most encouraging factor for a rheumatology career choice followed by "job opportunities" and "previous clinical exposure." Although 50% of PGY-1 residents had completed a rheumatology clinical rotation, 76% indicated that increased knowledge would affect rheumatology career choice. Only 38% were interested in novel rheumatology education. No difference in rheumatology exposure, rheumatology clinical rotation completion year, or rheumatology career choice was observed. Our research confirms findings from similar United States (US) and United Kingdom (UK) studies that suggest that increased MSK knowledge positively influences residents' confidence to diagnose/treat MSK disease. Our study differs with Canadian PGY-1 and PGY-2 IM residents by evaluating self-confidence to diagnose/treat MSK disease separately from self-confidence to perform a physical exam. Significant differences between first and second year trainees suggest types/quality of rheumatology experiences (e.g., case complexity, diagnostic problem-solving competency) may affect self-confidence to diagnose/treat MSK disease factors and rheumatology career choice.

Canadian Rheumatology Association Recommendations for the Assessment and Monitoring of Systemic Lupus Erythematosus.

OBJECTIVE: To develop recommendations for the assessment of people with systemic lupus erythematosus (SLE) in Canada. METHODS: Recommendations were developed using the GRADE (Grading of Recommendations Assessment, Development, and Evaluation) approach. The Canadian SLE Working Group (panel of Canadian rheumatologists and a patient representative from Canadian Arthritis Patient Alliance) was created. Questions for recommendation development were identified based on the results of a previous survey of SLE practice patterns of members of the Canadian Rheumatology Association. Systematic literature reviews of randomized trials and observational studies were conducted. Evidence to Decision tables were prepared and presented to the panel at 2 face-to-face meetings and online. RESULTS: There are 15 recommendations for assessing and monitoring SLE, with varying applicability to adult and pediatric patients. Three recommendations focus on diagnosis, disease activity, and damage assessment, suggesting the use of a validated disease activity score per visit and annual damage score. Strong recommendations were made for cardiovascular risk assessment and measuring anti-Ro and anti-La antibodies in the peripartum period and conditional recommendations for osteoporosis and osteonecrosis. Two conditional recommendations were made for peripartum assessments, 1 for cervical cancer screening and 2 for hepatitis B and C screening. A strong recommendation was made for annual influenza vaccination. CONCLUSION: These are considered the first guidelines using the GRADE method for the monitoring of SLE. Existing evidence is largely of low to moderate quality, resulting in more conditional than strong recommendations. Additional rigorous studies and special attention to pediatric SLE populations and patient preferences are needed.

Cardiovascular risk management in rheumatoid arthritis: A large gap to close.

OBJECTIVE: Rheumatoid arthritis (RA) portends significant cardiovascular morbidity and mortality. We therefore determined how often rheumatologists screened for and managed cardiovascular risk factors in RA patients, and the barriers to doing so. METHODS: We examined 300 patient charts from 10 university-affiliated rheumatology practices, to ascertain if they had been screened, treated and/or referred over a 3-year period. We subsequently distributed a national survey to Canadian rheumatologists to elucidate challenges in performing optimal cardiovascular risk modification. RESULTS: Most patients were screened for hypertension. Forty-one per cent were found to be hypertensive; however, the majority of these patients were neither treated nor referred to another provider for management. A small minority of patients were screened for diabetes and/or hyperlipidaemia, and these were usually not addressed if abnormal. Men were referred more frequently than women. Consistent with these findings, the majority of rheumatologists from the national survey felt that they did not manage cardiovascular risk adequately; 79.4% cited a lack of time as a major barrier, and 82.5% felt that it should be managed by the primary care provider. CONCLUSION: There is marked underdiagnosis and undertreatment of cardiac risk in RA. Several major barriers exist, including lack of time. Most rheumatologists feel that this aspect of care is the responsibility of primary care physicians.

Belimumab use, clinical outcomes and glucocorticoid reduction in patients with systemic lupus erythematosus receiving belimumab in clinical practice settings: results from the OBSErve Canada Study.

To describe the characteristics of patients receiving belimumab, overall patterns of systemic lupus erythematosus (SLE) care, clinical outcomes, and changes in glucocorticoid dose following 6 months of therapy with belimumab, and healthcare resource utilization in belimumab users in Canadian clinical practice settings. Retrospective multicenter medical chart review study of adult patients with SLE who were prescribed belimumab as part of usual care and who received ≥8 infusions or 6 months of treatment. Primary endpoints included physician-determined overall clinical improvement from baseline, glucocorticoid use, and physician-determined SLE disease severity at Month 6. In total, 52 patients were included in the study. At belimumab initiation, 5.8/76.9/17.3% of patients had mild/moderate/severe SLE, respectively. Oral glucocorticoids were discontinued in 11.4% of patients and 59.1% received a lower dose at Month 6. At Month 6, 80.8/57.7/17.3% of patients had a physician-determined clinical improvement of ≥20/≥50/≥80%, respectively. Sixteen patients had a SLE Disease Activity Index-2K score at both baseline and Month 6, with a mean improvement of 2.6 ± 5.3 from 8.1 ± 3.2 at baseline. No formal disease assessment tool was utilized for 42.3% of study patients at baseline. This study provides the first real-world insights into belimumab use in Canada. It demonstrates significant reduction or discontinuation of glucocorticoid dose in 70.5% of patients and clinically significant improvement following 6 months' belimumab therapy. The high number of patients with no formal disease activity assessments highlights a key care gap in SLE treatment in the real-world setting.

MR imaging of the spine and sacroiliac joints for spondyloarthritis: influence on clinical diagnostic confidence and patient management.

PURPOSE: To quantify the effect of magnetic resonance (MR) imaging of the spine and sacroiliac joints on clinical diagnostic confidence and to determine if MR imaging affects treatment of patients with axial spondyloarthritis. MATERIALS AND METHODS: This prospective observational study was approved by the research ethics board and included 55 consecutive patients referred by three rheumatologists for MR imaging of the spine and sacroiliac joints. Measures of diagnostic confidence for clinical features (inflammatory back pain, mechanical back pain, muscular back pain, radicular back pain, spondylitis, sacroiliitis, and other) and overall diagnoses were made by using a Likert scale both before and after MR imaging. Proposed treatment was similarly recorded before and after MR imaging interpretation. The McNemar test was performed to determine the change in diagnostic confidence and consequent effect on patient treatment. RESULTS: Diagnostic confidence for specific clinical features improved significantly after MR imaging for inflammatory back pain (14% vs 76%, before vs after; P < .001), mechanical back pain (4% vs 49%, P < .001), spondylitis (7% vs 76%, P < .001) and sacroiliitis (9% vs 87%, P < .001). Confidence for overall diagnoses also improved significantly after MR imaging for ankylosing spondylitis (29% vs 80%, P < .001), undifferentiated spondyloarthritis (58% vs 93%, P < .001) and osteoarthritis (29% vs 64%, P < .001). Of the 23 patients for whom tumor necrosis factor-α inhibitor (TNFi) therapy was recommended before MR imaging, 12 (52%) were prescribed TNFi therapy after MR imaging. Of the 32 patients for whom TNFi therapy was not recommended before MR imaging, 10 (31%) patients were prescribed TNFi therapy after MR imaging. Overall, 22 (40%) patients had a change in treatment recommendation regarding TNFi therapy after MR imaging. CONCLUSION: MR imaging of the spine and sacroiliac joints significantly influences the diagnostic confidence of rheumatologists regarding clinical features and overall diagnoses of axial spondyloarthritis, and consequently significantly affects treatment plans.

Ultrasound of the hands and feet for rheumatological disorders: influence on clinical diagnostic confidence and patient management.

PURPOSE: The purpose of the study was to quantify the impact that ultrasound (US) of the hands and feet has on the rheumatologists' diagnostic confidence and on patient management. MATERIALS AND METHODS: There were 62 consecutive referrals from two rheumatologists for US of the hands and/or feet for this prospective controlled observational study. Measurements of diagnostic confidence for both specific clinical findings as well as overall diagnosis using a Likert scale were made both before and after the US examination in each case. Proposed management was also recorded before US and then with the benefit of the US result. McNemar's test was performed to determine differences in diagnostic certainty and proposed management before and after US. RESULTS: The physician certainty for specific clinical findings increased significantly following US for synovitis (9.7 vs 38.7%), tenosynovitis (9.7 vs 46.8%), erosions (1.6 vs 58.1%), enthesitis (50.0 vs 83.9%) and other (53.2 vs 77.4%). The physician certainty for overall diagnosis increased significantly for seronegative arthritis (46.8 vs 61.3%), inflammatory osteoarthritis (46.8 vs 87.1%), and primary osteoarthritis (46.8 vs 73.0%). A total of 88.7% of patients had disease-modifying antirheumatic drugs as a proposed management option before US vs 48.4% after US. Before US, 4.8% of patients had non-steroidal anti-inflammatory drug as a proposed management option versus 45.2% after US. CONCLUSION: Ultrasound of the hands and/or feet significantly influenced the rheumatologists' diagnostic confidence in specific clinical findings and management plans.