Background: Discrepancies exist between reported experiences of patients when they have been given a diagnosis of cancer, published guidelines for telling a diagnosis, and patterns of communication patients rate as favorable. Several studies have identified what happened and what is important to cancer patients when told their diagnosis, but no studies have addressed subsequent communications concerning the implications of the diagnosis and treatment choices. This study extended previous research by investigating the experiences and preferences for communication about diagnosis, prognosis, and treatment of patients diagnosed with breast cancer or melanoma.
Methods: A self-report questionnaire was designed for this study based on previous research and qualitative data generated from focus groups. Patients with breast cancer or melanoma answered questions about their experiences with communication at the time of diagnosis and concerning prognosis, treatment and related issues. Comparisons were made between patient experiences, preferences and published guidelines. Differences between the experiences of breast cancer and melanoma patients were tested and the relationship between communication and subsequent psychological adjustment to cancer was assessed.
Results: Patient preferences for communication during diagnostic consultation were not always consistent with published guidelines. Type of cancer did not significantly affect patient preferences. Psychological adjustment was related to patient ratings of the quality of doctor discussion about treatment options, but not about the diagnosis of cancer and its implications. Patients who wanted more emotional support at the time of diagnosis subsequently experienced poorer psychological adjustment.
Conclusions: The differences in patient preferences show that a list of prescriptions for how to disclose a cancer diagnosis is too simplistic. Guidelines for clinicians should be derived from patient-based data rather than be limited only to clinical opinion. Guidelines concerning communication at the time of diagnosis also need to address discussions concerning the implications of the diagnosis and making treatment decisions.