This patient prioritisation process was conducted over an 8 month period between August 2023 and March 2024. As the project constituted patient and public involvement and engagement (PPIE) to identify and prioritize research questions, ethical approval was not required.

Project advisory group (PAG) and project partners

Individuals with lived breast cancer experience, those at high genetic risk and families/carers were the main partners for this project. As this was an extension of the JLA PSP, a small project advisory group (PAG) was convened consisting of breast cancer surgeons involved with the main PSP who had extensive knowledge of the data set and appropriate methodological expertise, and patient advocates from UK patient advocacy group, Independent Cancer Patients’ Voice (ICPV). The project was overseen by an independent facilitator (KC) with specialised expertise in using consensus methods for research prioritization, ensuring a robust, transparent, and inclusive process.

Scope

The scope of this patient prioritisation process was defined as information and/or support related to any aspect of breast cancer surgery which as per the JLA PSP encompassed ‘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’ [11]. This included but was not limited to information and support:

At diagnosis

Around treatment and in particular surgical decision-making

Around the time of surgery and recovery

Longer-term information and support in the survivorship period

Relating to risk-reduction surgery decision-making and the outcomes of risk-reducing surgery

Excluded were questions unrelated to breast cancer surgery, including those concerning aesthetic breast surgery in individuals without breast cancer, adjuvant breast cancer treatments including chemotherapy, radiotherapy, and endocrine therapy, as well as preclinical or basic science research related to breast disease. Decisions about whether questions were in or out of scope were made by the core study team (EJ, SP, SAMcI) and, if necessary, discussed with the PAG.

The project consisted of three phases (Fig. 1):

1.

Review of uncertainties submitted by patients/carers in the first phase of the Breast Cancer Surgery JLA PSP to identify themes related to information and support and develop of summary questions for inclusion in the Delphi survey

2.

Two rounds of a modified online Delphi survey

3.

An in-person prioritisation workshop with patient partners to agree the final top 10 research priorities for improving information and support for breast cancer surgery.

Fig. 1

Flow diagram summarising the identifying research priorities for improving information and support for patients undergoing breast cancer surgery patient prioritisation project

Review of submitted uncertainties, identification of themes, and development of summary questions

Free-text uncertainties submitted by patients/carers participating in the first JLA PSP survey were extracted verbatim and the raw data reviewed in detail. Each submitted uncertainty was separated into its component parts so that they could be reviewed and analysed separately. Each question was coded as in or out of scope (OOS), with OOS questions excluded from further analysis.

Questions considered in scope were reviewed in more detail and analysed thematically [12]. An inductive/deductive approach was taken to the submitted uncertainties: for example, ‘what does a wire do?’ was coded as ‘information relating to the surgical procedure’. Summary questions were then drafted based on emerging themes and iteratively refined as analysis progressed. Emerging themes and proposed questions were reviewed by a second researcher with experience of qualitative methods to ensure that they were grounded in the data and reflected the uncertainties raised by patient participants. The questions were reworded and revised based on feedback from patient advocate members of the PAG to ensure that they were understandable by a broad audience prior to inclusion in the Delphi survey. Evidence checking was undertaken as part of the JLA PSP. This focussed on high-quality data sources to identify the most relevant and up-to date evidence. The selected data sources were (i) UK guidelines; (ii) the Cochrane database of systematic reviews; (iii) Early Breast Cancer Clinical Trialists’ Collaborative Group (EBCTCG); and (iv) Targeted PUBMED searches [11]. Only guidelines or reviews published in the last 5 years were included to ensure they reflected the most up-to-date evidence in each area. Questions were considered answered if recent (within the last 5 years) systematic reviews identified moderate or high-quality evidence to address the topic. As no relevant guidelines updates or additional high-quality evidence (specifically, large-scale multicenter randomized trials) were identified as having been published or presented in the interim, a further detailed search was not considered necessary.

Modified online Delphi survey

Individuals with lived breast cancer experience and those at high genetic risk together with their families and carers were invited to participate in two rounds of an online Delphi survey to identify the top research priorities for improving information and support for women undergoing breast cancer surgery.

The survey was developed using SurveyMonkey software and included an introduction to the project, specific instructions regarding the importance of completing both rounds of the survey to establish consensus and a list of the questions generated from the survey data. Questions were presented in a random order and participants asked to select their top 10 from the list provided. Simple demographic information including age, geographical location and ethnicity was also collected. Participants were asked to provide a valid e-mail address for distribution of the round 2 survey and to express an interest in participating in the final in-person prioritisation workshop. The round 1 survey was open between 11/01/23 and 12/08/23 and was circulated widely via social media, patient advocacy groups and breast cancer charities to optimise engagement and participation.

All top 10 questions selected by respondents were given one point and the total score for each item calculated. The number and percentage of respondents including each round 1 question in their top 10 was summarized and fed back to participants in the round 2 survey.

All respondents who provided a valid e-mail address in Round 1 were invited to participate in Round 2. This comprised the same set of questions presented with a random order together with feedback from round 1. Participants were asked to review the questions again and choose their top 10 taking into account the feedback received. The round 2 survey was open between 12/29/2023 and 02/05/2024 and a reminder e-mail was sent to non-respondents 2–3 weeks after the initial invitation to optimise response rates.

Round 2 responses were scored in the same way as in round 1 with one point given to each item included in the top 10 and the total score used to determine the overall rank. Final rankings were reviewed by the core team (KC, SP and SAMcI) to determine which questions should be carried forward to the prioritisation workshop.

Final prioritisation workshop

Survey participants expressing an interest in taking part in the final in-person workshop were purposively invited to participate based on age, geographical location, and lived breast cancer experience to ensure their views were as representative of the UK breast cancer community as possible. Confirmed participants were asked to declare any interests or conflicts, and to submit a biography.

Prior to the workshop, all participants were sent information packs containing preparatory information and all attendees’ biographies, and asked to identify their ‘top three’ and ‘bottom three’ research priorities from the list provided.

The in-person workshop consisted of two rounds of discussion and voting with expert facilitation. During the workshop, taking an approach similar to that of the JLA PSP workshop, participants were divided into small groups of 5–6 individuals with differing experiences of breast cancer surgery and a facilitator. Following introductions, the facilitator asked each individual in turn to list their top and bottom three priorities and discuss the rationale for their choices. Once all individuals had shared their views, wider group discussions were encouraged with the facilitator ensuring each individual had the chance to participate, and maximising the opportunity for knowledge exchange and shared learning. Participants were then allocated to a new small group and again asked to share their top and bottom three research priorities, reflecting on whether or not these had changed following previous discussions. Workshop participants were then asked to anonymously select and rank their top 10 priorities for information and support research using online voting software and the final results presented to the whole group.

Feedback following presentation of top 10 research priorities

Following the in-person workshop, participants were sent an online survey asking for reflections on the process and their views on the top 10.