Improving Transition to Adult Care for Those With Developmental Disabilities: An Unclear Path

In this issue of Pediatrics, Levy et al¹ present a systematic review focused on the transition from pediatric to adult care for adolescents and young adults with neurodevelopmental disabilities. The transition from pediatric to adult health care is a challenge for patients with neurodevelopmental disabilities and their families.^2–4 Patients are not only changing from pediatric to adult health systems but also working on such things as getting the appropriate educational supports in college, applying for disability (if appropriate), or finding services for adults to replace the support services provided in the school setting. With this review, Levy et al¹ sought to identify those interventions that providers and systems can use to support families during this difficult process, ultimately concluding that although interventions may help with transition readiness and patient disease knowledge, the data are limited, especially with respect to patient quality of life, the primary outcome of interest in this review.

The review by Levy et al¹ is notable for its expansive consideration of transition interventions. The interventions themselves could consist of a specialized transition clinic, educational materials, a formal transition curriculum, or transition plan development, alone or in combination. The target could be patients, families, and/or providers. The interventions were done in a variety of settings, including high schools, colleges, community settings, and health care settings (clinics and hospitals). Their choice to consider transition in such a broad way resulted in the inclusion of a wide range of studies not considered in other systematic reviews on the topic. This review does not just update the evidence base with recently published studies; it challenges us as health care providers to consider transition beyond the health care space, just as the patients and families whom we take care of have to do. Unfortunately, even with a more expansive consideration, this systematic review is in agreement with others, in that we still do not know what works for transition.^5–8

Nearly every commentary on transition concludes with a call for more research, and this commentary will be no different. The review by Levy et al¹ underscores the need not only for more transition research but also for more rigor in the research conducted in the field.

One of the key gaps in improving research on transition is related to measuring transition success. This measurement concern is well recognized; it goes back over 25 years. In its first position statement on transition, the Society for Adolescent Medicine (now the Society for Adolescent Health and Medicine) asked, “What are the most appropriate outcome measures for evaluative [transition] research?”⁹ Today, we still do not have an answer. Improved measurement for transition is a scientific priority in the Eunice Kennedy Shriver National Institute of Child Health and Development 2020–2024 strategic plan.¹⁰ Transition research will be greatly improved by the consistent use of reliable, relevant, and feasible measures that are valid across the whole transition age spectrum, from 12 to 26 years. The science of measurement is often not compelling to those of us interested in implementing critically needed interventions, but without good measures, it will not be possible to really know what is successful.

Transition research would also be enhanced by improved conduct and reporting of trials of transition interventions. Levy et al¹ carefully describe the risk of bias across the studies included in their review and found moderate to high risk of bias in most of their included articles. To improve the process of transition, we must understand how we can build on the body of work to improve study rigor. Beyond improving measurement, there are opportunities to engage in a breadth of recruitment strategies to ensure that participants are representative of the population of interest, such as employing a range of methods used in other fields to minimize loss to follow-up and missing data^11,12 and thoroughly describing the timing and duration of interventions so that total exposure to particular interventions can be accurately compared across studies.

The studies involving transition interventions have often been time limited and focused on the period just before the actual transfer to adult care, which Levy et al¹ noted in their review. Although the time just before leaving pediatrics is an important one in the transition process, transition guidelines currently recommend beginning the transition process in early adolescence and continuing well after the handoff to an adult provider to ensure that the patient and family are settled into adult care.¹³ In other words, transition is not just the time from the last pediatric visit to the first adult visit. It should be a deliberate process that happens over years, not months. If transitional care spans years, so should transitional care research. In particular, and as Levy et al¹ note in the review, more studies need to consider the early and late stages of transition.

The challenges of transition are well documented. The solutions are not clear yet. I look forward to a day when the evidence is clearer. With reliable and valid measures being used in robust longitudinal trials, I think we can get there, and then we can use that science to improve transition for all the adolescents and young adults facing this daunting challenge.

• Copyright © 2020 by the American Academy of Pediatrics