Identifying research priorities for improving information and support for patients undergoing breast cancer surgery: A UK patient-centered priority setting project

Emma Johnston, Katherine Cowan, Mairead MacKenzie, Sonia Patton, Lesley Turner, Patricia Fairbrother, Stuart A McIntosh, Shelley Potter*

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Purpose
To use robust consensus methods with individuals with lived breast cancer experience to agree the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery in the UK.

Methods
Research uncertainties related to information and support for breast cancer surgery submitted by patients and carers were analysed thematically to generate summary questions for inclusion in an online Delphi survey. Individuals with lived breast cancer experience completed two Delphi rounds including feedback in which they selected their top 10 research priorities from the list provided. The most highly ranked priorities from the survey were discussed at an in-person prioritisation workshop at which the final top 10 was agreed.

Results
The 543 uncertainties submitted by 156 patients/carers were categorised into 63 summary questions for inclusion in the Delphi survey. Of the 237 individuals completing Round 1, 190 (80.2%) participated in Round 2. The top 25 survey questions were carried forward for discussion at the in-person prioritisation workshop at which 17 participants from across the UK agreed the final top 10 research priorities. Key themes included ensuring patients were fully informed about all treatment options and given balanced, tailored information to support informed decision-making and empower their recovery. Equity of access to treatments including contralateral mastectomy for symmetry was also considered a research priority.

Conclusion
This process has identified the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery. Work is now needed to develop studies to address these important questions.
Original languageEnglish
JournalBreast Cancer Research and Treatment
Early online date24 Jun 2024
DOIs
Publication statusE-pub ahead of print - 24 Jun 2024

Bibliographical note

Publisher Copyright:
© The Author(s) 2024.

Keywords

  • breast cancer surgery
  • research priorities
  • consensus
  • information and support
  • James Lind Alliance (JLA)

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