Survey of patients’ knowledge relating to their cancer and its concordance with the treating medical teams.

Abstract

Background: Patient empowerment is an important tool to help patients cope with their cancer diagnosis. Understanding the disease process, treatment intent & prognosis enables patients to prioritise their short- and long-term objectives during their cancer journey. Oncologists have an inherent obligation to clearly explain the diagnosis, disease extent and treatment objectives to their patients. Methods: This is a cross-sectional survey of 46 oncology patients being treated with systemic chemotherapy in a tertiary-level oncology centre in Bangladesh. We tested the patients’ knowledge/awareness across 4 domains relating to their disease, namely, diagnosis, disease extent, treatment intent (i.e. curative/palliative) and prognosis (i.e. expected survival in months). The patients and their oncologists were interviewed based on a structured questionnaire. Results: Of the 46 patients, 35 were aware of their cancer diagnosis (76%). However, out of 24 patients with metastatic disease, only 11 were aware of the extent of the disease (46%). According to the oncologists, 18 patients were being treated with curative intent and 28 patients with palliative intent; but a significant number of patients thought that they were being treated with curative intent (39 patients, 85%) while only 15% patients were aware of the palliative intent of their treatment. Most patients grossly overestimated their expected survival compared to their treating team (>12 months survival, 94% pts vs 57% doctors; 6-12 months, 4% pts vs 26% doctors). Across all 4 domains tested, the Lin’s concordance correlation coefficient was <0.90 (Pc = 0.3518) indicating poor concordance between patients’ perceived knowledge about disease, treatment and prognosis and treating team’s assessment. Conclusions: This study highlights the ongoing need to improve on clinical communication between patients and their treating oncology teams. Not having a clear understanding of one’s cancer diagnosis, disease extent and treatment intent will only add to increased anxiety, distress and unrealistic expectations on the patient’s part. Clinicians have an obligation to close the knowledge gap and empower the patient with appropriate information, in a sensitive and compassionate manner.