Research Priorities of Young People Living with Chronic Conditions and their Caregivers

OUR GOAL: We aimed to identify the highest priority research questions of young people living with chronic illness and their caregivers. The rising number of children carrying chronic disease with them into adulthood presents the research community with an obligation to address their unique needs.


OUR PROCESS: We recruited 3 cohorts of participants (adolescent patients age 15-18 years, young adult patients age 19-25 years, and caregivers) from two hospitals and two community organizations.  Participants attended focus groups where we utilized the Research Prioritization by Affected Communities (RPAC) method to identify unanswered questions about chronic conditions in the context of the participant’s own experiences. 


WHAT WE LEARNED: The participants developed and prioritized 300 potentially researchable questions. The top ranked questions for each group are listed here:


San Francisco Adolescent Patient Questions

Oakland Adolescent Patient Questions

San Francisco Caregiver Questions

Oakland Caregiver Questions

San Francisco Young Adult Patient Questions


THEMES: Although the top-ranked research topics varied by group, the following five topics were priorities across all groups:

Read our published papers

Research Questions That Matter To Us: priorities of young people with chronic illnesses and their caregivers 

Getting to Hope: perspectives from patients and caregivers living with chronic childhood illness