The perspective of a breast cancer patient: A survey study assessing needs and expectations.

Abstract

32 Background: Patient satisfaction is one of the key indicators of health care quality. We aim to identify patients’ needs and expectations in a breast cancer clinic to provide a patient-centered care and better overall satisfaction. Methods: A 17-item survey was administered to 49 patients at a breast cancer clinic. The survey was designed after a thorough literature review and approved by an oncologist and a palliative care physician. Results: Self-reported knowledge about disease was reported adequate by 95.9% of our patients yet only 46.9% of our patients could identify the stage of their cancer. More education was desired by 39% of patients including various treatment options (35%), common complications (29%), prognosis (22%) and risk factors (14%). Cancer-related emotional stress and physical symptoms were reported by 53% of our patients. Social/professional life was affected by cancer in 49% of the patients. Majority of our patients (57%) wanted their oncologist to address social/emotional issues and 28% felt the need of more focus on physical symptoms in their subsequent visits. End-of-life care (EoLC) discussions were considered an integral component of overall care by 22% of our patients. Components of EoLC discussions that patients stated they could benefit from included prognosis (24.5%), life expectancy (24.5%), treatment effect on quality of life (20.4%), palliative care (10.2%), hospice (10.2%), advance directives (14.3%), and family involvement in medical decision-making (12.2%). More patients wanted to initiate EoLC discussions when they requested it (30.6%) or their oncologist thought it was appropriate (30.6%) as compared to when it may change treatment course (12.2%) or at diagnosis (8.2%). More patients wanted to have EoLC discussions only once (40.8%) as compared to at regular intervals (32.7%). Conclusions: A discrepancy between self-reported and actual knowledge in breast cancer patients emphasizes the need of patient education. Most patients rely on their oncologist for their diagnosis related emotional and social issues. Surprisingly, a quarter of our patients consider EoLC discussions important even though majority of our patients were healthy and having stage I disease.