A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

Abstract

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

“…We scanned grey literature (e.g., websites of hospitals, bills from the Canadian federal and provincial government) on existing policies in Canada to support healthcare transition. We then held a dialogue event to discuss key priorities and suggest policy recommendations for improving the process of healthcare transition, and findings from our work have now been published [30].…”

“…Table 1 provides examples of subgroup activities that took place throughout the READYorNot ™ BBD Project. Among these include opportunities where PFAC members provided leadership on initiatives that were personally meaningful to them (e.g., development of an advocacy and policy planning perspective paper addressing age of transfer from pediatric to adult healthcare services [30]), co-developed knowledge translation products (e.g., a research video series to explain research in youth-friendly terms) and co-presented at conferences and webinars as well as co-authored research papers.…”

“…Co-development of an advocacy and policy planning perspective paper (1) A literature review of existing legislation surrounding the age of transfer in the 4 regions of our trial; (2) Development of patient vignettes to facilitate a dialogue event-with the goal to highlight gaps in the current landscape and to develop recommendations for a future state in terms of transition from pediatric to adult healthcare; and (3) Development of an advocacy and policy planning perspective paper to serve as a stepping stone for improving transition experience for youth with BBD in Canada [30] Provided significant input in the planning and organization of the dialogue, cohosted and helped to facilitate breakout room sessions. Shared relevant and reallife examples to help inform the development of a set of patient vignettes and additional prompting questions.…”