In this issue of Pediatrics, Bailey et al1 completed a systematic review to synthesize the current literature on quality indicators regarding the transition to adult health care. They noted several gaps impacting on quality indicators for transition. One key vulnerable population caught our attention, and that was the need for quality indicators for youth with intellectual and developmental disabilities (IDD).
Youth with IDD and their families face unique challenges when confronting the transition to adulthood both in health care settings and in other domains of life. These challenges include establishing a guardian (or not) for youth as clinically appropriate, identifying the appropriate post–high school activities (which vary and could include college, vocational training, employment, and/or a day program), establishing the necessary supports for employment and independent living, and navigating the move from pediatric to adult health insurance and the changes in coverage that accompany that move.
Well-done qualitative work has described how youth with IDD and their families define a successful transition to adulthood.2–7 Themes for success include maximizing participation across health, education, vocational, and family activities, a functional role in society reflective of a person’s capabilities and interests and accompanied by the appropriate supports, and independence in basic self-care skills. These principles have been incorporated into a framework called the F-words of child development — fitness, functioning, family, friendships, and fun — that synthesize these ideas into a set of core concepts for future quality indicator development.8,9 We view this framework as a critical component for operationalizing quality indicators for transition to adult health care on a population level for youth with IDD.
An important next step for translating these patient- and family-defined goals into quality indicators is to develop discrete measures that can be operationalized across health care organizations. Measures organized around the F-words of child development can be completed quickly by patients and/or family members at the beginning of a health care visit and are an important base for discussing aspirations for higher education, vocational training, medical encounters, and social networks as youth with IDD transition to adult roles. Before this can be done, however, we need data to determine if these measures are reliable in the whole transition age population (14 to 26 in the United States), that they fully capture both supports and independence, and that the measures are responsive to changes in youth over time.
Without specific measures and evidence-based management pathways, providers caring for youth with IDD must negotiate several fragmented systems including health, education, vocational training, and community-based independent or supported living without clear targets or goals. This can feel overwhelming, as we seek to provide the best care that we can without a clear definition of what that even is. Future work on quality indicators, informed by a focus on function, should provide clarity, especially if that work is done with the suggestions that Bailey et al recommend, such as involving patients and families in the development process and considering equity as an indicator.1
Although the work of developing quality indicators and evidence-based management pathways of optimizing these key outcomes such as function continues, we as clinicians can still partner with youth with IDD and their families as they face the current challenges of under-resourced, fragmented, and crisis-oriented health care services during the transition to adulthood. To do so, we must think back to our core ideals as pediatricians: listen to families, support them in their goals, and walk alongside them as best we can. For us as clinicians, the journey will often come to an end in the form of a transfer to an adult provider. Our goal should be this: as we reach the finish line as clinicians for this population of patients, it is just the beginning of a thriving adulthood for the patients themselves.
Current circumstances make this goal a challenge. Youth with IDD often spend months on waitlists for services and supports that optimize their physical, behavioral, and social health. The separation from supports because of coronavirus disease 2019 restrictions and the resultant isolation have only further exacerbated the struggles with transitioning to adulthood for youth with IDD. If we assume an advocacy mindset, these quality indicators can become part of a process to change our paradigm in health services from expensive crisis management pathways to interventions of prevention and wellness and bring that goal of a thriving adulthood for youth with IDD closer to reality.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2021-055033.
FUNDING: No external funding.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.