Evidence map›Paper›PMID 40358906›Full record

ArticleJournal of cancer survivorship : research and practice2025

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, Joanna F Parkinson, Badr El Bakkali El Kasmi, Diane Martin, Susan Stratford, Emily Haws, Stéphanie Bernard, Anna Kennedy, Naomi D Dolgoy, David Keast and 1 more

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Article in Journal of cancer survivorship : research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

11 authors.

Mona M Al OnaziDepartment of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
Joanna F ParkinsonDepartment of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
Badr El Bakkali El KasmiDepartment of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
Diane Martin, Airdrie, AB, Canada.
Susan Stratford, Winnipeg, MB, Canada.
Emily HawsDepartment of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
Stéphanie BernardSchool of Rehabilitation Sciences, Faculty of Medicine, Université de Laval, Québec City, Canada.
Anna KennedyGuideline Steering Committee, Toronto, Canada.
Naomi D DolgoyDepartment of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
David KeastParkwood Institute Research, Lawson Health Research Institute, Parkwood Institute, St. Joseph's Health Care, London, Canada.
Margaret L McNeelyDepartment of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada. mmcneely@ualberta.ca.

Funding

CIHR 183439
6 · The paper itself

Abstract

backgroundClinical 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.

methodsA 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.

resultsA 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.

conclusionThe 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.

Indexed as

Breast cancerLymphedemaPatient-centered carePatient preferencePractice guidelineQualitative researchSurveys and questionnaires

Identifiers

PMID40358906

What OpenQuestion holds

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.