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. 2025 May 13.
doi: 10.1007/s11764-025-01800-w. Online ahead of print.

Right out of the gate: a mixed method study on the needs and priorities of individuals with or at risk of breast cancer-related lymphedema

Mona M Al Onazi  1 , Joanna F Parkinson  1   2 , Badr El Bakkali El Kasmi  1 , Diane Martin  3 , Susan Stratford  4 , Emily Haws  1 , Stéphanie Bernard  5 , Anna Kennedy  6 , Naomi D Dolgoy  7 , David Keast  8 , Margaret L McNeely  9   10
Affiliations

Right out of the gate: a mixed method study on the needs and priorities of individuals with or at risk of breast cancer-related lymphedema

Mona M Al Onazi et al. J Cancer Surviv. .

Abstract

Background: Clinical practice guidelines aim to standardize care and improve patient outcomes; however, they often lack input from patients themselves. Integrating the perspectives of individuals with lived experience ensures guidelines align with patient needs and priorities.

Purpose: This study is part of the update to the Canadian Clinical Practice Guideline for breast cancer-related lymphedema (BCRL). Our goal was to identify the priority questions of individuals living with breast cancer to inform the development of guideline recommendations. The secondary aims were to identify the concerns, and barriers and facilitators to accessing lymphedema care.

Methods: A mixed-methods study design was employed using a Canada-wide cross-sectional survey and focus group discussions. Qualitative data were analyzed using inductive thematic analysis.

Results: A total of 137 participants with breast cancer completed the online survey, with 112 (81.8%) reporting BCRL. Six priority questions were identified: (i) What is my individual risk for BCRL? (ii) How can I lower my chances of developing BCRL? (iii) Do I have lymphedema? (iv) What are the effective treatment options for BCRL? (v) How can I best self-manage my lymphedema over the longer term? and (vi) How should my lymphedema be monitored over time? Participants expressed concern over developing or worsening of BCRL, and highlighted inconsistencies in care across Canada. Qualitative analyses revealed three themes: empowering patients, supporting self-management, and creating a surveillance plan/roadmap for lymphedema care.

Conclusion: The findings will be used to guide patient-level clinical recommendations and knowledge translation tools. Addressing barriers may further a more equitable approach to patient-centered care.

Implications for cancer survivors: Involving individuals with lived experience of breast cancer in guideline development and decision-making ensures that recommendations are truly reflective of the priorities of individuals affected by the condition. The overarching themes will support actionable strategies that align with the needs and priorities of individuals with breast cancer.

Keywords: Breast cancer; Lymphedema; Patient preference; Patient-centered care; Practice guideline; Qualitative research; Surveys and questionnaires.

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Conflict of interest statement

Declarations. Competing interests: The authors declare no competing interests.

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