Understanding what drives genetic study participation: Perspectives of patients, carers, and relatives.

ABSTRACT: Genetic research's growing importance in understanding pulmonary arterial hypertension (PAH) and developing effective treatments prompted the RAPID-PAH study. This study sought feedback from stakeholders who participated in two genomic studies to enhance genetic study delivery and clinical integration. Stakeholders from nine UK PH centres, representing various roles, ages, genders, and mutation statuses, took part in 53 semi-structured interviews and focus groups. Transcripts were thematically coded using inductive analysis. Clustering analysis was conducted to identify patient groups that shared attitudes. In this paper, we focus on patients', carers', and relatives' perspectives. The key interview themes revealed insights into participants' attitudes toward genetic research and testing m

SUBMITTER: Swietlik EM 

PROVIDER: S-EPMC10867872 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature