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Children with congenital heart disease 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 their voices be heard in all phases of clinical and health services research. Objectives: 1. To include the patient voice in all phases of the research process. 2. To determine the key needs of patients living with CHD to guide health services research. 3. To identify the “top-ten” research priorities of teens and adults living with CHD.
Methods and Results
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. Thirty-five patients participated in one of nine 3-hour focus groups where they shared their experiences living with CHD. They expressed a desire for connection with others living with CHD and altruistic motives for participating. CHD patients identified a need for information about their disease and prognosis, a need for connection through physical activity and mentorship programs, and a need for advanced communication with health care teams. Qualitative results correlated well with quantitative ratings to create a patient-derived “Top 10” research priorities list.
Conclusions: Patients affected by a chronic disease like CHD want to be included in all phases of research. Our research-priority setting exercise in teens and adults with CHD has created a roadmap for clinicians and researchers to investigate issues of most import to those living with CHD.