The purpose of this Notice is to inform potential applicants that the National Heart, Lung, and Blood Institute (NHLBI) is participating, effective immediately, in NOT-HD-21-027 "Notice of Special Interest (NOSI): Navigating Pediatric to Adult Health Care: Lost in Transition".
NHLBI encourages research that aligns with the Institute's strategic goals and objectives.
For this NOSI, NHLBI is interested in stimulating research that focuses on the unique health care transition periods for patients with Heart, Lung, Blood and Sleep (HLBS) diseases and disorders.
With improved rates of survival in childhood illnesses in the United States and globally, individuals are living longer with one or more chronic conditions. During the health care transition period, there are several barriers to accessing and engaging in age-appropriate care which could lead to an increased risk for long-term physical and psychosocial effects from these chronic conditions and their treatments. Children and adolescents with chronic HLBS diseases and disorders often require complex multidisciplinary care. As such, it is critical to ensure that health care transitions in this context include coordination of these complexities of care that are unique to chronic HLBS conditions.
To harmonize with our ongoing efforts across the Institute’s pediatric research portfolio, this Notice of Special Interest is designed to solicit research that will address the needs of diverse populations with chronic HLBS conditions. Applications responsive to this Notice are encouraged to propose research that will advance our understanding of promising practices designed to facilitate successful health care transitions as well as address barriers and facilitators to such transitions that may be unique to youth with HLBS diseases and disorders. The ultimate goal is to provide a research framework that will enhance quality of care, promote health literacy, and improve patient and family outcomes during and after health care transitions
Specific research examples include, but are not limited to:
- Critical research gaps and clinical practice needs for transition care across the lifespan with the understanding that transition periods may be unique to specific HLBS diseases and disorders such as neonatal to infancy to childhood, or teen to adult periods
- Studies that seek to understand the unique health care transition periods for lung disease of prematurity and bronchopulmonary dysplasia across the lifespan for children who have received intensive care
- Teen to adult health care transitions for chronic sleep disorders and pediatric to adult health care transitions for asthma
- Transition from pediatric to adolescent to adult health care for congenital heart conditions
- Special transition needs for the many types of non-malignant chronic blood disorders in children and teens such as Sickle Cell Disease, Hemophilia, Thalassemia, Von-Willebrand disease, and others where curative options are not part of treatment for a patient
- Transition care for patients who received therapies that specifically require ongoing health monitoring, such as hematopoietic cell transplantation and liver or kidney transplant recipients in which their condition intersects with underlying HLBS diseases or disorders
- Impact of self-efficacy, resilience and self-reliance on patient adherence to therapies during adolescent to adult health care transition periods for chronic HLBS diseases including sleep disorders
- Studies that incorporate comorbidities such as diabetes and obesity as they intersect with HLBS diseases and conditions for which transition research can facilitate health promotion and prevention
- Studies of age-related changes in mechanisms and manifestations of disease across key health care transitional periods, particularly in those individuals who have a high lifetime risk for HLBS conditions
- Studies to test interventions that seek to mitigate the effects of discontinuities in health care and family/social systems during transition from adolescence to adulthood
- Studies of benefits and harms that result from clinical practice guidelines and regulatory approvals of drugs and devices that are based on precise age ranges
- Transition care studies as part of ancillary studies to ongoing HLBS clinical research studies, including determining the effects of the parent study intervention(s) on an additional outcome(s) or disease(s)
- Studies that seek to understand the contributions of factors such as sex, race, ethnicity, and social determinants of health to variations in health care transition practices for HLBS disorders
- Understand local adaptations in transition care in the context of the implementation of evidence-based practices
- Determine factors that contribute to the sustainability of evidence-based interventions in public health and clinical practice for transition care
- Compare cost-effectiveness of implementation or dissemination strategies in transition care to reduce health disparities and improve quality of care among rural, minority, low literacy and numeracy, and other underserved populations
- Investigate strategies for reducing or stopping (“de-implementation”) the use of clinical and community practices in transition care that are ineffective, unproven, low-value, or harmful
Note: For this NOSI, NHLBI will only accept applications that target PA-20-185 NIH Research Project Grant (Parent R01 Clinical Trial Not Allowed).
Marrah Lachowicz-Scroggins, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Financial/Grants Management Contact
National Heart, Lung, and Blood Institute (NHLBI)