Adolescence and young adulthood are unique periods of life, characterized by a progression toward independence and developmental changes in cognition, behavior, and social roles. From a healthcare perspective, adolescents and young adults (AYAs) also experience unique risks to their health and well-being. As such, there are critical considerations for developmentally appropriate healthcare services, particularly for AYAs with chronic conditions that require a continuity of health care across the lifespan. Lived experiences of AYAs with chronic health conditions have revealed various unmet needs, specifically relating to mental health, access to services, and how knowledge is shared and applied in health care. Therefore, the primary aim of this Pipeline to Proposal Tier III project is to collaborate with patient stakeholders, researchers, and healthcare providers to develop a research design and grant proposal that incorporates one of these domains.
This work builds on successes from Tiers I and II in the PCORI pipeline, which began with AYAs with spinal cord injuries and expanded to consider needs and concerns of AYAs across diagnostic groups, primarily including diabetes, rheumatic disease, and spinal cord injuries. While each of these conditions stipulate highly individualized care, we have identified several characteristics across diagnoses that call for collaboration among specialties to better support developmental trajectories and transitions in this period of life. Ultimately, through this work, we hope to support AYAs to become more engaged in research planning, implementation, and dissemination in order to positively affect health care for this population and promote patient-centered collaborations.