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

Research output: Contribution to journalArticlepeer-review

Standard

Research priorities in single-ventricle heart conditions : a United Kingdom national study. / Drury, Nigel; Stoll, Victoria; Bond, Chris; Patel, Akshay; Hutchinson, Suzie; Clift, Paul.

In: Cardiology in the Young, 21.12.2018.

Research output: Contribution to journalArticlepeer-review

Harvard

APA

Vancouver

Author

Bibtex

@article{dea7986da3dd418c8c5fc94946651785,
title = "Research priorities in single-ventricle heart conditions: a United Kingdom national study",
abstract = "Objective: To bring together stakeholders in the United Kingdom to establish national priorities for research in single ventricle heart conditions.Methods: This study comprised two surveys and a workshop. The initial public online survey asked respondents for up to 3 questions they would like answered by 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 a final list of research priorities.Results: 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, divided into 20 categories. 56 (49.1%) respondents successfully ranked categories and questions in the second survey. 39 participants attended the workshop, drawing up a list of 30 research priorities across 9 priority categories: 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.Conclusions: 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 UK and elsewhere to address the most important questions and improve outcomes in these rare but high-impact congenital heart defects.",
keywords = "Single-ventricle heart conditions, Fontan circulation, research priorities, patient involvement",
author = "Nigel Drury and Victoria Stoll and Chris Bond and Akshay Patel and Suzie Hutchinson and Paul Clift",
year = "2018",
month = dec,
day = "21",
doi = "10.1017/ S104795111800224X",
language = "English",
journal = "Cardiology in the Young",
issn = "1047-9511",
publisher = "Cambridge University Press",

}

RIS

TY - JOUR

T1 - Research priorities in single-ventricle heart conditions

T2 - a United Kingdom national study

AU - Drury, Nigel

AU - Stoll, Victoria

AU - Bond, Chris

AU - Patel, Akshay

AU - Hutchinson, Suzie

AU - Clift, Paul

PY - 2018/12/21

Y1 - 2018/12/21

N2 - Objective: To bring together stakeholders in the United Kingdom to establish national priorities for research in single ventricle heart conditions.Methods: This study comprised two surveys and a workshop. The initial public online survey asked respondents for up to 3 questions they would like answered by 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 a final list of research priorities.Results: 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, divided into 20 categories. 56 (49.1%) respondents successfully ranked categories and questions in the second survey. 39 participants attended the workshop, drawing up a list of 30 research priorities across 9 priority categories: 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.Conclusions: 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 UK and elsewhere to address the most important questions and improve outcomes in these rare but high-impact congenital heart defects.

AB - Objective: To bring together stakeholders in the United Kingdom to establish national priorities for research in single ventricle heart conditions.Methods: This study comprised two surveys and a workshop. The initial public online survey asked respondents for up to 3 questions they would like answered by 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 a final list of research priorities.Results: 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, divided into 20 categories. 56 (49.1%) respondents successfully ranked categories and questions in the second survey. 39 participants attended the workshop, drawing up a list of 30 research priorities across 9 priority categories: 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.Conclusions: 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 UK and elsewhere to address the most important questions and improve outcomes in these rare but high-impact congenital heart defects.

KW - Single-ventricle heart conditions

KW - Fontan circulation

KW - research priorities

KW - patient involvement

U2 - 10.1017/ S104795111800224X

DO - 10.1017/ S104795111800224X

M3 - Article

C2 - 30572973

JO - Cardiology in the Young

JF - Cardiology in the Young

SN - 1047-9511

ER -