Purpose
The purpose of this Notice of Special Interest (NOSI) is to encourage applications in high-priority research areas related to pediatric health care transition for youth with chronic physical/medical conditions or intellectual/developmental disabilities. Research applications that will advance our understanding of promising practices designed to facilitate successful health care transitions (HCT) from pediatric to adult care settings as well as barriers and facilitators to such transition are encouraged. The ultimate goal is to improve care quality and patient and family outcomes during and after HCT.
Background
With improved rates of survival in childhood illnesses in the United States and globally, individuals are living longer with one or more chronic conditions. Children and adolescents with chronic conditions face increased health risks that require complex multidisciplinary care. As children transition from pediatric to adult health care services, however, there are several barriers that lead to issues accessing and engaging in age-appropriate care, managing developmental needs, and supporting optimal health. Challenges include increased risk for late and long-term physical and psychosocial effects of chronic conditions and their treatments, as well as subsequent care arising from additional comorbid conditions. As such, it is critical to ensure that the transition from pediatric to adult health care services includes coordination of the complexities of care for chronic conditions.
To meet the needs of diverse populations with chronic physical/medical conditions or intellectual/developmental disabilities as they transition from pediatric to adult centric services, barriers to successful HCT, methods and measures for capturing HCT, and the identification of promising practices must be better understood. Additionally, HCT should consider the context of typical developmental processes during the transition to adulthood as well as the multiple domains of functioning that are critical to life success (e.g., schooling, work, housing). Lastly, new technologies designed to manage, monitor, provide guidance/support, or otherwise facilitate successful HCT could potentially bridge gaps in current practices.
On September 30 and October 1, 2020, NIH sponsored a Workshop, "Navigating Pediatric to Adult Health Care: Lost in Transition”. Efforts from this workshop and identified common themes highlighted shared research gaps and opportunities that can complement ongoing disease-specific work across NIH and collaborating organizations, and further defined research needs of youth with chronic physical/medical conditions or intellectual/developmental disabilities in the context of the health care transition (https://web.cvent.com/event/1861c38c-e953-4ffa-a0f1-1688840fb295/summary).