Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

Abstract

Background Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will undergo a transition including the o transfer of care from a pediatric rheumatologist an adult rheumatologist. Missing from the literature is research that centres the transition experience of young people with JIA in Canada. This goal of this patient-led research was to explore the experience young people with JIA through the process of transition. Methods Qualitative study using the Patient and Community Engaged Research (PaCER) approach. Trained patient-researchers conducted three focus groups using the Set, Collect and Reflect PaCER process. Participants, recruited via purposive and snowball sampling using research/personal networks and social media, were young people with JIA in Canada between 18 and 28 years who had experienced with the process of transition to adult care. Recordings were transcribed verbatim. Patient researchers individually coded overlapping sections of the data, and thematic analysis was conducted. Results In total, nine individuals participated in one or more focus groups. Three themes were identified, with sub-themes: preparedness for transition (readiness for the transfer of care, developing self-advocacy skills), continuity and breadth of care (changing relationships, culture shock, new responsibilities), need for support (social support, mental health support, and ongoing support needs – beyond the transfer of care. Peer support was a connecting concept in the support sub-themes. Transition was more than a change in primary physician but also a change in the care model and breadth of care provided, which was challenging for young people especially if they had insufficient information. Conclusions Transition from pediatric to adult care in rheumatology is a significant period for young people living with JIA, and this patient-led study provided insight into the experience from the perspective of young people with JIA which is critical to informing the development of supports for patients through the process. Patients, caregivers, pediatric and adult rheumatologists and members of the multi-disciplinary care team need to collaborate in terms of resources preparing for transfer, and support throughout the transition process to ensure a successful transition process.

Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements

“…Additionally, this follows the Patient and Community Engagement Research approach, 26 which has been used before, [27][28][29] and addresses how individuals with lived experience have a level of understanding others could not. Finally, people who agreed to participate in the study may have been better informed than other Black people living with RA in Canada, more interested in discussing the topics, or more likely to have experienced inequities in health care access and quality of care.…”

Why and How Should We Assess the Cardiovascular Risk in Patients with Juvenile Idiopathic Arthritis? A Single-Centre Experience with Carotid Intima-Media Measurements

“…Current approaches regarding the personalized treatment of JIA postulates that complex management should be provided by a multidisciplinary team involving trained physicians, nurses, physiotherapists, psychologists, and other allied health professionals [ 70 ]. The current article questions whether a pediatric cardiologist should become a regular member of the team in order to manage cardiovascular risks in JIA patients.…”

Patient and public involvement in rheumatic and musculoskeletal research: an idea whose time has firmly come

“…Jethwa et al reported on a patient-driven pilot survey which collected patient perspectives on telemedicine appointments during the COVID-19 pandemic. Currie et al [ 15 ] shared a patient-led qualitative study in juvenile idiopathic arthritis to help transition from juvenile to adult rheumatology care [ 16 ]. Kee et al and Oyebanjo et al both highlighted PPI in clinical care frameworks.…”