Introduction: The doctor-patient interaction is the first element of brain tumor care, yet for delivering the bad news of initial diagnosis, the majority of communication guidelines are not evidence-based. Our objective was to quantitatively evaluate patient preferences in communication of a brain tumor diagnosis and compare them to actual experiences.
Methods: Cross-sectional paper survey of neurosurgery outpatients with primary or metastatic brain malignancies diagnosed within 1 year of participation. The 46-item survey asked patients to reflect on the initial communication of their diagnosis and rank how well each item matched their actual experience, as well as perceived importance of that item, on a 5-point Likert scale. We descriptively summarized our findings and used the Wilcoxon rank-sum test to evaluate overall congruence between experiences and preferences, as well as identify disparities in specific aspects of communication.
Results: Twenty-seven of 35 (77%) screened patients participated, with mean age 61 years (SD 14.8), 56% female, and 93% with metastases. Radiosurgery was most commonly used as initial management, with a 3.1-month (SD 3.8) mean duration of diagnosis. Patients regarded items addressing message content as most important and emotional support as least important. Experiences mostly matched preferences in the content area, but minimally matched in the support area. Overall, survey items were rated as very important (mean 4.16, SD 1.12), but only somewhat matching experiences (mean 3.62, SD 1.57), which identified a significant difference between preference and experience (mean 0.53, SD 1.13, p<0.001). The greatest discrepancies were in aspects of content and support.
Conclusions: In this exploratory study, patients with brain malignancies ranked most aspects of communicating bad news as very important; however, items addressing information content were most essential. Patients did not report experiences as strongly matching preferences. Identifying these discrepancies should assist physicians in refining communication skills.
Patient Care: Comparing patient preferences to actual experiences will highlight areas of mismatch between perceived importance and actual occurrence, thus providing areas of focus for physicians. Identification of patient preferences will allow physicians to tailor communication of diagnosis to the individual patient, making a difficult physician task easier, decreasing patient distress, and improving patient experience. Results could have future implications in physician training and education.
Learning Objectives: By the conclusion of this session, participants should be able to:
1) Identify and discuss communication methods that patients with brain tumors find important when receiving bad news.
2) Compare patient preferences in communication of a brain tumor diagnosis with their actual experiences.