Shared concern with current breast cancer rehabilitation services: a focus group study of survivors’ and professionals’ experiences and preferences for rehabilitation care delivery

OBJECTIVES: Breast cancer survivors experience a wide spectrum of physical sequelae from cancer treatment. National and international guidelines recommend that rehabilitation is offered from the point of diagnosis. However, there is a lack of data on the translation of these recommendations into clinical care. The objective of this study was to explore the experiences of breast cancer survivors, rehabilitation professionals and breast surgeons on current rehabilitation services including preferences for care delivery, specific ways to promote early detection and timely management of upper body issues and attitudes towards self-managed surveillance and rehabilitation. DESIGN: Qualitative focus groups. Breast cancer survivors completed a questionnaire about rehabilitation services received and experience of upper body issues. These quantitative data were collected to provide context for the qualitative data and increase transferability. Transcripts were analysed using content analysis. SETTING: Five geographically distinct health authorities in British Columbia, Canada. PARTICIPANTS: Eleven focus groups were conducted with 35 breast cancer survivors, 29 rehabilitation professionals and 5 breast surgeons. RESULTS: Three categories captured participants’ concern and wish for improved care: (1) cut the cancer out and goodbye; (2) you have to look out for yourself and (3) in a perfect world. All breast cancer survivors reported chronic upper body issues (mean 4.5 unique issues). Breast cancer survivors expressed worry and uncertainty in their solo management of the rehabilitation. The current services were reported to not enable early detection and timely management. Suggestions included reorganising the timing of patient education and improving the quality of and access to rehabilitation services by elevating the knowledge among healthcare professionals and providing multimodal self-management resources. CONCLUSIONS: The results revealed a gap between oncology guidelines and the current clinical reality. The rehabilitation services were reported in need of revamping to increase equity of care. Multiple upper body issues were reported by many breast cancer survivors.