Boundouki George, Wilson Rebecca, Duxbury Paula, Henderson Julia, Ballance Laura, Wray Julie, Appanah Vivienne, Ibrahim Ibrahim, Harvey James, Kirwan Cliona Clare
The Nightingale Breast Cancer Unit, Wythenshawe Hospital, Manchester University NHS Foundation Trust, Manchester, UK.
Royal Liverpool University Hospital, Liverpool, UK.
BMJ Open. 2021 Jan 29;11(1):e036072. doi: 10.1136/bmjopen-2019-036072.
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.
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.
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.
A framework approach was used to analyse transcribed discussions until thematic saturation was reached.
Breast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals.
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.
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.
国际公认的乳腺癌专家科学家、临床医生和医疗保健专业人员已公布了乳腺癌研究差距，这些差距为英国乃至全球的研究资金优先事项提供了参考。我们旨在确定公众对乳腺癌的研究优先事项，以便与临床医生和科学家确定的优先事项进行比较。
我们进行了一项定性研究和主题分析，采用“倾听活动”，让乳腺癌患者和公众代表利用患者的乳腺癌病程来确定研究主题。
女性参与者从英格兰西北部参与研究的医院的参与者以及支持小组中招募，包括患者、他们的家人和朋友以及当地一家零售中心的工作人员。
采用框架方法分析转录的讨论内容，直至达到主题饱和。
从参与者的讨论中确定乳腺癌研究优先事项，并与科学家和医疗保健专业人员公布的差距进行比较。
27名女性参与者参加倾听活动后达到了主题饱和。我们的参与者始终关注改进信息传播方法以及加强对乳腺癌体征和症状的教育。这一点未被科学家或医疗保健专业人员所强调。强烈强调与生活质量相关的问题，如治疗的副作用。我们的研究推断出的优先事项与专业人员在筛查、预防和乳房重建领域的优先事项存在一些共识。
我们的研究确定了一些在两项早期具有里程碑意义的研究中未被科学家和医疗保健专业人员识别的研究主题。这凸显了在确定研究优先事项时纳入患者和公众代表的重要性。研究结果应用于指导研究人员规划未来研究，并为资助机构分配未来项目的资源提供参考。
