Determining Research Priorities With Teen and Adult Congenital Heart Disease Patients: A Mixed-Methods Study.

ABSTRACT: Children with congenital heart disease (CHD) are living longer than ever before. This growing cohort of adults with CHD has high medical and psychosocial needs. Also, patients and advocacy groups are justifiably demanding that their voices be heard in all phases of clinical and health services research. We conducted a first of its kind research priority-setting exercise with teens and adults with moderate-to-complex CHD. Focus groups were held using a fixed, mixed methods, exploratory sequential design. Objectives were to include the patient voice in all phases of the research process, determine the key needs of patients living with CHD, to guide health services research, and identify the "top 10" research priorities of teens and adults living with CHD. Thirty-five patients participated in

SUBMITTER: Keir M 

PROVIDER: S-EPMC10642133 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature