Navigating Pediatric to Adult Health Care: Lost in Transition – A Special Interest Grant Opportunity
Addressing the challenges of transitions in care from pediatric to adult healthcare services is a high priority for Children’s Cancer Cause and the development of programs and resources around this issue is a core component of our Stewart Survivorship Initiative.
We were pleased to see that several institutes and centers of the National Institutes of Health (NIH), including the National Cancer Institute (NCI), recently published a Notice of Special Interest (NOSI NOTHD-21-027) focused on navigating transitions from pediatric to adult health care. The purpose of this Notice of Special Interest (NOSI) is to encourage applications in high-priority research areas related to transition from pediatric to adult health care for youth with chronic physical/medical conditions or intellectual/developmental disabilities. Research applications that will advance the 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. The NOSI covers healthcare transitions for children and adolescents managing chronic medical conditions, including cancer.
It is well-documented that childhood cancer survivors face barriers transitioning from pediatric to adult healthcare services which lead to issues accessing and engaging age-appropriate care, managing developmental needs, and supporting optimal health. Because child and adolescent cancer survivors are at increased risk for late and long-term physical and psychosocial effects of cancer and its treatment, as well as second malignancies and other comorbid conditions, it is critical to ensure that the transition from pediatric to adult healthcare services includes coordination to manage the complex surveillance and management of survivorship care.
An impetus for development of this special interest grant opportunity was the 2020 NIH Workshop, "Navigating Pediatric to Adult Health Care: Lost in Transition”. The workshop 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).
Grant Applications Scope and Scientific Emphasis
The NCI’s Division of Cancer Control and Population Sciences is seeking R21 and R01 applications focused on transitions from pediatric to adult healthcare for patients and survivors of pediatric and adolescent and young adult (AYA) cancers. According to the announcement, “Cancer-specific research studies focused on understanding and improving pathways connecting pediatric to adult-focused oncology services, interactions between oncology and primary care, and the integration of caregivers supporting cancer-care transitions are of high priority.” Applications should “investigate approaches to meet the needs of youth with chronic physical/medical conditions or intellectual/developmental disabilities with the goal of improving care quality and patient and family outcomes during healthcare transitions.” The detailed grant announcement is found here: NOT-HD-21-027: Notice of Special Interest (NOSI): Navigating Pediatric to Adult Health Care: Lost in Transition (nih.gov).
The scope and areas of scientific emphasis for cancer survivorship include:
Studies that utilize community and social network resources, such as peers or families, to strengthen or facilitate successful transition by enhancing patient independence and self-efficacy as emerging adult patients transition between pediatric and adult care providers and health care settings.
Studies that examine the developmental, clinical, individual, family, structural and/or health system factors that may predict a successful transition for youth with chronic conditions or intellectual/developmental disabilities to adult care. Studies that examine the interaction of these factors are encouraged.
Studies that develop, pilot and/or validate novel measures or methods to assess successful health care transition outcomes across a range of domains of functioning. Such innovations may incorporate the use of mobile or digital devices when appropriate.
Studies to improve and coordinate information exchanges between pediatric and adult care settings and/or providers regarding treatment and payment plans, care coordination and integration. In the context of HCT, this may include specialty care coordination (from pediatric primary care or specialty care to adult primary care or specialty care or some combination), programs for mental health and/or substance use disorders, or insurance and other benefits when applicable.
Studies to improve and facilitate communication, information exchange, and care coordination between health care providers, families, and youth in order to facilitate successful transition(s). Such studies could include a focus on health literacy when appropriate.
Studies with a focus on social support and other family, group, or system level interventions to improve health care transition outcomes by engaging patients, family caregivers, community partners and/or peers as appropriate.
Grant Details/Timeline
The complete list of research examples is found here: https://grants.nih.gov/grants/guide/notice-files/NOT-HD-21-027.html
Details for submitting a grant are found at https://grants.nih.gov/grants/guide/pa-files/PAR-21-190.html. Applications will be accepted between November 8, 2021-March 7, 2024, the first round of Scientific Merit Review will occur in March 2022, and the earliest start date for awards is July 2022. For questions, contact Michelle Mollica, PhD, MPH, RN, OCN, Program Director, Outcomes Research Branch, Healthcare Delivery Research Program, NCI, at michelle.mollica@nih.gov.