Identifying research priorities in breast cancer surgery: a UK priority setting partnership with the James Lind Alliance

The Breast Cancer Surgery PSP was conducted in accordance with the process outlined in the JLA Guidebook over a 26 month period between February 2020 and April 2022 [8]. Delays attributable to the Covid-19 pandemic meant that this process took longer than usual for a PSP.

Steering group and partner organisations

Steering group members were recruited from UK professional and charitable organisations and included patients, breast and plastic surgeons and specialist nurses. Stakeholder representation on the steering group included The ABS (representing breast surgeons and breast care nurse specialists), Independent Cancer Patients’ Voice (ICPV – a patient advocate group independent of UK cancer charities and researchers), Breast Cancer Now (BCN – the UK’s largest breast cancer charity, which provides support for patients and is also a research funder) and the National Cancer Research Institute (NCRI – which connects government departments, charities, industry and research councils to support and develop cancer research in the UK). A JLA advisor (KC) facilitated the process, providing support and guidance to ensure that JLA principles and methods were adhered to throughout. An information specialist team with appropriate qualitative and quantitative methodological expertise (KF, SP) managed the data and undertook the analysis. Each step was overseen by the steering group.

Partners for the PSP were defined as i) people who been treated for breast cancer, ii) those at high-risk of breast cancer requiring surveillance or active risk management, iii) carers or partners of people who have had breast cancer, iv) HCPs including surgeons, breast care nurse specialists and clinicians from other disciplines with clinical experience of the diagnosis and management of breast cancer. As the SARS-CoV-2 pandemic limited the range of PSP activities that were feasible, the steering group focussed on optimising engagement online. This included developing a comprehensive list of partner organisations with whom the PSP could be shared and promoted.

Scope

The scope of the PSP was defined as including all areas of breast cancer care where breast surgeons were primarily involved in clinical management or where surgical input was central to multi-disciplinary treatment. This included but was not limited to:

Assessment, diagnosis and primary treatment selection for women and men with invasive and non-invasive breast cancer

Surgical techniques, technologies and devices, including oncoplastic and reconstructive breast cancer surgery, and their implementation and evaluation

Interactions between surgical treatments and neoadjuvant/adjuvant systemic and loco-regional therapies

Quality of life issues related to the surgical treatment of breast cancer

Identification and management of people at increased risk of breast cancer

Excluded were questions relating to aesthetic breast surgery in individuals without breast cancer; adjuvant breast cancer treatments including chemotherapy, radiotherapy and endocrine therapy; and preclinical or basic science research relating to breast disease.

Decisions about whether questions were in or out of scope were made by the information specialist team and ratified by the steering group.

Initial survey and identification of themes

The initial survey was developed by the steering group and invited participants to submit research uncertainties in 3 main areas (i) The diagnosis and initial treatment of people with breast cancer, or the care of people at high-risk of developing breast cancer (ii) The choice and timing of breast cancer surgery (iii) Experiences around breast cancer surgery. Examples were included with each question as a prompt to the types of issues that respondents may wish to consider (online Appendix 1). Uncertainties were collected as free text together with simple respondent demographics. Following a successful pilot, the survey was launched in March 2021. The link was disseminated widely to PSP partners through professional groups, charities, patient groups and via social media. The survey was open for a 14-week period between 30/3/21 and 8/7/21. Responses were monitored and efforts made to reach underrepresented groups including men, individuals at the extremes of age and ethnic minorities.

Following the close of the survey, responses were downloaded, cleaned and analysed by the information specialist team. Simple summary statistics were used to summarise respondent demographics. Each free-text response was reviewed. If a response included more than one question, it was broken down into its components so that individual questions could be reviewed and coded separately.

Initially, questions were coded as being in or out of scope (OOS) and OOS questions excluded from further analysis. Questions considered in scope were then reviewed in detail and following a period of data immersion, analysed thematically [9]. Indicative questions were drafted based on emerging themes and iteratively refined as data analysis progressed to ensure they were grounded in the data. Where possible, indicative questions were grouped into summary questions covering a broader topic area.

Batches of indicative and summary questions together with the raw submitted data were reviewed by pairs of steering group members to ensure that the proposed questions captured the essence/meaning of the submitted responses and were comprehensive. Summary questions were revised based on feedback from each small group and the full list of summary questions circulated to the wider steering group for review. The list was iteratively modified based on further feedback from the steering group and the final list of summary questions for evidence checking agreed.

Evidence checking

The summary questions were checked against evidence to determine which, if any, had already been answered by research and could be excluded from further prioritisation. A high-level evidence check was undertaken focussing on four high-quality clinically relevant data sources to identify the most up-to-date and relevant evidence. The selected data sources were (i) UK guidelines including those from the National Institute of Health and Care Excellence (NICE) and relevant professional surgical associations (ABS] and the British Association of Plastic, Reconstructive and Aesthetic Surgeons [BAPRAS]; (ii) the Cochrane database of systematic reviews, (iii) reviews undertaken by the Early Breast Cancer Clinical Trialists’ Collaborative Group (EBCTCG) and iv) targeted PUBMED searches using key words for each summary question to identify recently published systematic reviews and meta-analyses. Only recent guidelines or reviews published in the last 5 years were considered in the evidence check to ensure they reflected the most up-to-date evidence in each area. Questions were considered answered if recent systematic reviews identified moderate or high-quality evidence to address the topic. The JLA process does not consider ongoing studies when evaluating evidence of uncertainty as it is possible that these studies may not address the uncertainty identified. Ongoing clinical trials were noted but were not included in the assessment of whether or not an uncertainty had been addressed. Questions addressing overlapping issues were merged to generate a smaller number of broader questions to be taken forward to the next stage. Following completion of the evidence check, the final list of answered and unanswered summary questions together with supporting evidence were reviewed and ratified by the steering group. The unanswered questions were then reworded and reviewed by lay members of the steering group to ensure they could be understood by a broad audience and carried forward for prioritisation in the interim priority setting survey.

Interim prioritisation survey

The interim prioritisation survey asked respondents to choose their top 10 research priorities from the list of summary questions, presented in random order. Simple respondent demographics including respondent group, age, geographical location and ethnicity were also collected and participants asked to express an interest in participating in the final priority setting workshop. The survey was open between 8/2/22 and 21/3/22 and was disseminated widely as previously described.

All questions ranked in the top 10 by respondents were given one point and the total score for each item used to determine the overall rank. Each respondent group was considered separately to promote equal weighting of stakeholder groups. The steering group reviewed the rankings and decided on a manageable number of questions to be carried forward to the final prioritisation workshop.

Final prioritisation workshop

The final prioritisation workshop was held online on 28th April 2022. Survey respondents expressing an interest were purposively invited to participate based on stakeholder group, geographical location, age and gender to ensure the broadest possible representation of views. Individuals with lived experience were selected to include those who had undergone breast conserving surgery and mastectomy with and without breast reconstruction, neoadjuvant treatment and those individuals at high-risk for breast cancer. An honorarium was offered to lay workshop participants in line with NIHR recommendations.

The consensus process followed standard JLA methodology for online consensus workshops [8]. Prior to the workshop, individuals were sent introductory materials and videos and asked to rank the questions from highest to lowest priority. During the workshop, participants were divided into small groups of 5–6 each including professionals and individuals with lived experience. A JLA advisor facilitated each group and asked each participant in turn to list their highest and lowest priorities and discuss the rationale for their choice. Each small group then discussed and agreed a full ranked order of the questions. The JLA advisors combined the respective rankings from each small group to create a shared rank order that was shared with the wider group. Participants were then allocated to a new small group to review, discuss and revise the shared ranked order of the questions, with the JLA advisor ensuring that all participants had the opportunity to share their reviews before each group re-ranked of the questions. Final rankings from all groups were then combined and to create the final ranked list of consensus priorities that were fed back to the whole group.

Feedback following presentation of top 10 research priorities

Following the consensus workshop, participants were sent a survey asking for reflections on the process and feedback about the workshop itself.

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