Research priorities in single-ventricle heart conditions: a United Kingdom national study

• Published in: Cardiology in the young Vol. 29; no. 3; pp. 303 - 309
• Main Authors: Drury, Nigel E., Stoll, Victoria M., Bond, Chris J., Patel, Akshay J., Hutchinson, Suzie, Clift, Paul F.
• Format: Journal Article
• Language: English
• Published: Cambridge, UK Cambridge University Press 01.03.2019
• Subjects: Adolescent; Adult; Adults; Aged; Biomedical Research - organization & administration; Brain; Cardiac Surgical Procedures; Cardiovascular disease; Categories; Charities; Collaboration; Congenital diseases; Delivery of Health Care - methods; Families & family life; Female; Guidebooks; Health care; Heart; Heart Defects, Congenital - epidemiology; Heart Defects, Congenital - surgery; Heart diseases; Heart function; Heart surgery; Heart Ventricles - abnormalities; Hospitals; Humans; Male; Medical personnel; Middle Aged; Morbidity - trends; Original Article; Parents; Physiology; Polls & surveys; Preoperative Care; Priorities; Professionals; Quality of life; Retrospective Studies; Social networks; Surgery; Surveys and Questionnaires; Transplantation; United Kingdom - epidemiology; Ventricle; Young Adult; United Kingdom; New Zealand; United Kingdom > UK; Australia; research priorities; Fontan circulation; Single-ventricle heart conditions; patient involvement
• ISSN: 1047-9511; 1467-1107
• DOI: 10.1017/S104795111800224X

To bring together stakeholders in the United Kingdom to establish national priorities for research in single-ventricle heart conditions. This study comprised two surveys and a workshop. The initial public online survey asked respondents up to three questions they would like answered for research. Responses were classified as unanswered, already answered, or unable to be answered by scientific research. In the follow-up survey, unanswered questions were divided into categories and respondents were asked to rank categories and questions by priority. A stakeholder workshop attended by patients, parents, healthcare professionals, researchers, and charities was held to determine the final list of research priorities. A total of 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, which were divided into 20 categories. In the second survey, 56 (49.1%) respondents successfully ranked categories and questions. A total of 39 participants attended the workshop, drawing up a list of 30 research priorities across nine priority categories. The nine priority categories are: Associated co-morbidities; Brain & neurodevelopment; Exercise; Fontan failure; Heart function; Living with a single ventricle heart condition; Management of the well-functioning Fontan circulation; Surgery & perioperative care; and Transplantation, mechanical support & novel therapies. Through a multi-stage process, we engaged a wide range of interested parties to establish a list of research priorities in single-ventricle heart conditions. This provides a platform for clinicians, researchers, and funders in the United Kingdom and elsewhere to address the most important questions and improve outcomes in these rare but high-impact CHDs.