Development and Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis

Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease in children diagnosed under the age of 16 years. The overarching aim of this thesis was to develop and evaluate the acceptability of a self-management program (SMP) for adolescents with JIA. A systematized review of literature was conducted to understand the effectiveness of pre-existing self-management interventions for adolescents with JIA. The findings of this review provided insight into the key elements of our SMP, including the creation of a multicomponent and multisession intervention. In the development phase, the content, format, and structure of our program was determined using a previously completed needs assessment for adolescents with JIA and additional input from adolescents with JIA and interdisciplinary pediatric rheumatology health professionals at the Alberta Children’s Hospital. The program incorporated knowledge from the Public Health Ontario Program Planner framework and Lorig’s self-management theory. Semi-structured focus groups were conducted with adolescents with JIA and healthcare providers to examine the acceptability of the SMP. Finally, thematic analysis of the focus groups was performed to evaluate the acceptability of the program. Findings from the qualitative phase revealed that adolescents and healthcare providers appreciated the program. Participants provided valuable recommendations to improve its structure, design aesthetics, and content prior to conducting future feasibility and effectiveness trials. The findings from this thesis contribute to existing research on the development and acceptability of group-based, in-person, and videoconference SMP for adolescents with JIA and could inform future feasibility and effectiveness trials

Global Rural and Remote Patients with Rheumatoid Arthritis: A Systematic Review of Disease Epidemiology, Clinical Outcomes and Health Service Utilization

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