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Patient and public priorities for breast cancer research: a qualitative study in the UK

OBJECTIVE: Internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the pub...

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Autores principales: Boundouki, George, Wilson, Rebecca, Duxbury, Paula, Henderson, Julia, Ballance, Laura, Wray, Julie, Appanah, Vivienne, Ibrahim, Ibrahim, Harvey, James, Kirwan, Cliona Clare
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849895/
https://www.ncbi.nlm.nih.gov/pubmed/33514570
http://dx.doi.org/10.1136/bmjopen-2019-036072
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author Boundouki, George
Wilson, Rebecca
Duxbury, Paula
Henderson, Julia
Ballance, Laura
Wray, Julie
Appanah, Vivienne
Ibrahim, Ibrahim
Harvey, James
Kirwan, Cliona Clare
author_facet Boundouki, George
Wilson, Rebecca
Duxbury, Paula
Henderson, Julia
Ballance, Laura
Wray, Julie
Appanah, Vivienne
Ibrahim, Ibrahim
Harvey, James
Kirwan, Cliona Clare
author_sort Boundouki, George
collection PubMed
description OBJECTIVE: Internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists. DESIGN: We conducted a qualitative study and thematic analysis using ‘listening events’ where patients with breast cancer and public representatives used a patient’s breast cancer journey to identify research themes. PARTICIPANTS AND SETTING: Female participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre. INTERVENTION: A framework approach was used to analyse transcribed discussions until thematic saturation was reached. MAIN OUTCOME MEASURES: Breast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals. RESULTS: Thematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction. CONCLUSION: Our study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects.
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spelling pubmed-78498952021-02-02 Patient and public priorities for breast cancer research: a qualitative study in the UK Boundouki, George Wilson, Rebecca Duxbury, Paula Henderson, Julia Ballance, Laura Wray, Julie Appanah, Vivienne Ibrahim, Ibrahim Harvey, James Kirwan, Cliona Clare BMJ Open Patient-Centred Medicine OBJECTIVE: Internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists. DESIGN: We conducted a qualitative study and thematic analysis using ‘listening events’ where patients with breast cancer and public representatives used a patient’s breast cancer journey to identify research themes. PARTICIPANTS AND SETTING: Female participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre. INTERVENTION: A framework approach was used to analyse transcribed discussions until thematic saturation was reached. MAIN OUTCOME MEASURES: Breast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals. RESULTS: Thematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction. CONCLUSION: Our study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects. BMJ Publishing Group 2021-01-29 /pmc/articles/PMC7849895/ /pubmed/33514570 http://dx.doi.org/10.1136/bmjopen-2019-036072 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Patient-Centred Medicine
Boundouki, George
Wilson, Rebecca
Duxbury, Paula
Henderson, Julia
Ballance, Laura
Wray, Julie
Appanah, Vivienne
Ibrahim, Ibrahim
Harvey, James
Kirwan, Cliona Clare
Patient and public priorities for breast cancer research: a qualitative study in the UK
title Patient and public priorities for breast cancer research: a qualitative study in the UK
title_full Patient and public priorities for breast cancer research: a qualitative study in the UK
title_fullStr Patient and public priorities for breast cancer research: a qualitative study in the UK
title_full_unstemmed Patient and public priorities for breast cancer research: a qualitative study in the UK
title_short Patient and public priorities for breast cancer research: a qualitative study in the UK
title_sort patient and public priorities for breast cancer research: a qualitative study in the uk
topic Patient-Centred Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849895/
https://www.ncbi.nlm.nih.gov/pubmed/33514570
http://dx.doi.org/10.1136/bmjopen-2019-036072
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