National Priorities for High-quality Rheumatology Transition Care for Youth in Canada.

Abstract

To conduct a needs assessment and environmental scan to support optimal transition from pediatric to adult rheumatology care in Canada. This initiative involved 3 phases: (1) 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; (2) an environmental scan, through semistructured interviews, of existing rheumatology transition service care models and challenges in care delivery; and (3) a focus group to prioritize national activities. The needs assessment survey was completed by 65 members, with 66% agreeing that a national approach to transition care was needed. Semistructured interviews reflecting activities at 9 transition care sites were conducted, and they 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 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. 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.