The transition in care from a pediatric to an adult setting for emerging adults with SCD is a life-changing event with a high risk of care discontinuity. While care for pediatric SCD patients is generally well managed, the transition to adult care can lead to a decrease in quality of care, a breakdown in care coordination, and potential disengagement of individuals with SCD from the healthcare system to the detriment of their health and well-being. PCORI seeks to fill current evidence gaps about how to improve the care transition process and patient-centered and clinical outcomes for emerging adults with SCD. Current guidelines are based on weak evidence and/or consensus-based opinion.

PCORI seeks to fund up to three (3) cluster randomized controlled trials (RCTs), which will compare the effectiveness of established transition coordination models for emerging adults (e.g., 16-25 years of age) with sickle cell disease transitioning from pediatric to adult care. The research is expected to examine direct comparisons of efficacious or commonly used transition coordination models or interventions. Interventions are required to demonstrate robust engagement of patients, caregivers, clinicians, and other key stakeholders. Interventions should incorporate patient-centered strategies within a health system setting. Note that this funding program does not support applications to conduct cost-effectiveness analysis, systematic reviews, or development and evaluation of shared decision making or decision-support tools.

Proposed studies should address the priority research question identified in the main body of the PFA. This preannouncement of the PFA is provided to allow potential applicants additional time to identify collaborators, obtain stakeholder input on the research question, and develop responsive, high-quality proposals.

Helpful Resource

PCORI's Board of Governors approved this topic at its meeting on May 23, 2016. Additional information regarding the specifics of this upcoming targeted PFA can be found in the meeting's presentation slides.