Objective Conduct a needs assessment and environmental scan to support optimal pediatric to adult rheumatology care transitions in Canada. Methods This initiative involved three phases: a survey-based needs assessment of adult and pediatric rheumatologist members of the Canadian Rheumatology Association to identify perceived infrastructure, educational needs and national resources to support transition care; an environmental scan, via semi-structured interviews, of existing rheumatology transition service care models and challenges in care delivery; and a focus group to prioritize national activities. Results The needs assessment survey was completed by 65 members, with 66% agreeing a national approach to transition care was needed. Semi-structured interviews reflecting activities at 9 transition care sites were conducted, and identified candidate models of care, including direct transfer, progressive transfer and shared care models. Challenges and needs experienced in these care models reflected resource and infrastructure needs, poor availability of mechanisms to support parents and youth through the transition process, and the need for evaluation to support quality improvement. The focus group and prioritization activity was attended by 26 participants, with each having the ability to cast 3 votes. Supporting patient/family education for transition to adult rheumatology health care system” (n=17 votes) and “Advocacy activities to access allied health support, including funding” (n=10 votes) emerged as the top priorities for national initiatives. Conclusion We have identified priorities in education and advocacy for advancing transition care in Canada that require participation of pediatric and adult rheumatology providers, patients and arthritis stakeholders in the interest of advancing transition care outcomes.

ObjectiveThe objective of this study was to identify patient‐reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA).MethodsA cross‐sectional observational study of children aged 8 to 17, diagnosed with JIA, and followed in the rheumatology clinic/Alberta Children's Hospital was performed. Demographics, diagnosis, and disease course were obtained from health records. A questionnaire was administered to the child to assess the barriers experienced by JIA patients at school. The questionnaire collected information about school attendance/performance, impact of JIA symptoms (eg, pain and fatigue), physical challenges and accommodations, communication, participation and peers, and school support. Descriptive statistics were used to analyze the data.ResultsA total of 98 children with JIA were recruited into the study. The median age of participants was 13 years (interquartile range 11‐15). The JIA subtypes in this cohort reflected the normal JIA distribution. Physical challenges at school (eg, gym, writing, and sitting for long periods of time) were reported by 42.1% of patients. Accommodations (eg, modified gym, accommodation letter, and computer access) were used by 23% of patients. The inability to participate in activities in class or outside with their peers occurred for 32.2% of patients and in gym for 40.7% of patients. Social concerns included embarrassment from talking about their illness, worry regarding being treated differently, and being told they were fabricating their illness.ConclusionChildren with JIA experienced barriers at school, especially physical challenges, with a need for accommodations in a proportion of children. Decreased participation and increased social anxiety were additional key barriers.

Objective Rural and remote patients with rheumatoid arthritis (RA) are at risk for inequities in health outcomes based on differences in physical environments and health care access potential compared to urban populations. The aim of this systematic review was to synthesize epidemiology, clinical outcomes, and health service use reported for global populations with RA residing in rural and remote locations. Methods Medline, Embase, HealthStar, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the Cochrane Library were searched from inception to June 2019 using librarian‐developed search terms for RA and rural and remote populations. Peer‐reviewed published manuscripts were included if they reported on epidemiologic, clinical, or health service use outcomes. Results Fifty‐four articles were included for data synthesis, representing studies from all continents. In 11 studies in which there was an appropriate urban population comparator, rural and remote populations were not at increased risk for RA; 1 study reported increased prevalence, and 5 studies reported decreased prevalence in rural and remote populations. Clinical characteristics of rural and remote populations in studies with an appropriate urban comparator showed no significant differences in disease activity measures or disability, but 1 study reported worse physical function and health‐related quality of life in rural and remote populations. Studies reporting on health service use provided evidence that rural and remote residence adversely impacts diagnostic time, ongoing follow‐up, access to RA‐care–related practitioners and services, and variation in medication access and use, with prominent heterogeneity noted between countries. Conclusion RA epidemiology and clinical outcomes are not necessarily different between rural/remote and urban populations within countries. Rural and remote patients face greater barriers to care, which increases the risk for inequities in outcomes.

Objective. The study objective was to test the acceptability of a self-management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) focused on disease information, self-management, and social support needs.Methods. This study was conducted using inductive qualitative methods to explore the acceptability of an in-person/videoconference SMP. Two groups of four adolescents with JIA (mean age = 13.5, SD = 0.8) and two groups of pediatric rheumatology health care professionals (n = 4, n = 5) participated in four feedback sessions each. The SMP was presented to study participants, and feedback was provided on the content, format, and structure of the program. Thematic analysis was used to analyze the data.Results. Adolescents felt that the content was appropriate and would be effective in supporting self-management of their arthritis. Participants advised that the trustworthiness of the information would be increased if a rheumatology health care provider facilitated the session. Potential barriers to participation included distance and availability (weekdays and times), but the option for videoconference-based participation was an appropriate solution to both of these issues. Minor changes were made to content and format, and required changes were made to address participant recommendations for improvement.Conclusion. This study confirmed the acceptability of an in-person/videoconference SMP for patients with JIA. Modifications were made to the SMP based on the focus group feedback, and future directions include a pilot randomized controlled trial to assess feasibility and preliminary effectiveness of the program.

Introduction: Rural and remote patients with rheumatoid arthritis (RA) are at risk for inequities in health outcomes based on differences in physical environments and healthcare access potential compared to urban populations. The aim of this systematic review was to synthesize epidemiology, clinical outcomes and health service use reported for global populations with RA residing in rural/remote locations. Methods: Medline, EMBASE, Healthstar, CINAHL and Cochrane were searched from inception to June 2019 using librarian-developed search terms for RA and rural/remote populations. Peer-reviewed published manuscripts were included if they reported on any of an epidemiology, clinical or health service use outcomes. Results: 54 articles were included for data synthesis, representing studies from all continents. In 11 studies where there was an appropriate urban population comparator, rural/remote populations were not at increased risk for RA, 1 study reported increased and 5 studies reported decreased prevalence in rural/remote populations. Clinical characteristics of rural/remote populations in studies with an appropriate urban comparator showed no significant differences in disease activity measures or disability, but with 1 study reporting worse physical function and health-related quality of life in rural/remote populations. Studies reporting on health service use provided evidence that rural/remote residence impacts diagnostic time, ongoing follow-up, access to RA-care related practitioners and services, and with variation in medication access and use. Conclusion: This synthesis highlights that RA epidemiology and clinical outcomes are not necessarily different between rural/remote and urban populations, however rural/remote patients face greater barriers to care which increases the risk for inequities in outcomes. From a public health perspective, we need leadership to implement structures and policies to support better outcomes in rural and remote populations. Access to health services is a recognized determinant of health, which presents the opportunity for actionable strategies and approaches to resolve inequities in care delivery.