Survivors of breast cancer: patient perspectives on survivorship care planning

Abstract

Survivors of breast cancer (SBC) constitute the largest population of cancer survivors. Needs for survivorship care may vary according to life stage and urban/rural place of residence. This study was conducted to better understand patient preferences for survivorship care plans (SCP). Patients were identified through cancer agency electronic records and invited to participate by mail. Sessions were stratified by age and rural/urban place of residence. Participants were asked about preferences for content and format of SCP. Focus groups were conducted using a semi-structured format with interviews being taped, transcribed, cross-checked for accuracy, and analyzed independently, using constant comparative methods. Preferred SCP key elements included treatment summary, information on nutrition/exercise, expected side effects, signs and symptoms of recurrence, recommended follow-up schedule, information sent to primary care physician, and updates on changes. SBC emphasized preference for individualized content depending upon physical and psychosocial effects. No difference was observed between preferred SCP content among patients residing in urban/rural areas. Rural participants preferred electronic formats for ongoing information bulletins and communication with health care providers. SBC from all age groups identify common preferences for key SCP elements with individualized content reflecting the wide variation observed among physical and psychosocial effects of breast cancer. Patterns of key psychological, social, and physical effects observed at different life stages may help SCP customization. Results provide direction for designing key content and format of SCP and also provide information about elements of care planning that should be customized to individual patient needs.