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, Margaret L McNeely
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引用次数: 0
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.
期刊介绍：
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.
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