The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease

Abstract

Abstract Background To achieve patient-centric quality care in neuro-oncology, all aspects of the disease and its impact on quality survival need to be considered. This includes the psychological consequences of a brain tumor diagnosis and subsequent life-altering experiences. Far too often the voice of our patients is unheard. Empowering patients to advocate for their own psychological needs is essential. Methods Data were derived from four focus groups with adult patients with brain tumors (N = 15; Mage = 46 years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients’ care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on the quality of life and distress reduction. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (Mkappa = 0.92, range = 0.85–0.93) was achieved. Two themes are presented here: Emotional Response to Stressors and Existential Considerations. Results Of the two themes presented, 14 codes emerged. Codes were classified into three broad categories: Fear, Despair, and Resilience. The frequency of each category ranged from 31.4% to 34.7%. Example quotes and a discussion of each category follows. Conclusions It is imperative that we include the patient perspective in the development of neuro-oncology programs, thereby considering the quality of survival in addition to quantity. Neuro-oncology quality care must be driven by our patients' experiences and should integrate support for emotional distress while promoting resilience throughout this life-threatening illness.