Breast cancer survivors' post-treatment engagement with healthcare providers and recommendations for survivorship care

Introduction: The population of cancer survivors has grown substantially in recent decades. Concurrently, there is a growing emphasis on patient-centered care. This study documents breast cancer survivors' health care decision support needs and their experiences engaging health professionals in the post-treatment survivorship period.

Methods: A series of five focus groups were held with women receiving support services at a breast cancer resource organization in California (N=21). Each group centered on a different aspect of treatment including: diagnosis, surgery and reconstruction, systemic therapy, radiation therapy, quality of life and survivorship. Data were coded for key themes using qualitative methods.

Results: Recurrent themes described by survivors included (1) a sense of abandonment and lack of communication with healthcare providers after active treatment, (2) lack of sufficient attention paid by healthcare providers to the long-term physical and emotional impact of breast cancer and (3) the absence of a clear and consistent post-treatment care plan developed in collaboration with healthcare providers. Survivors provided recommendations for what to incorporate into a post-treatment care plan including patient education about cancer survivorship, whom to communicate with about post-treatment side effects and having a primary point of contact or dedicated clinic to assist patients in navigating and making decisions about management of survivorship.

Conclusions: While much has been published about patient-provider communication and engagement during cancer treatment, little is known about interactions in the post-treatment survivorship period. These data suggest a need for greater awareness among healthcare providers of support and decision-making needs during cancer survivorship.