Living with brain metastases—A longitudinal qualitative study of patient experiences from time of diagnosis

Abstract Background Brain metastases (BM) are prevalent intracranial neoplasms in adults, affecting 20%-40% of cancer patients. With improved systemic therapies and neuroimaging, the frequency of BM diagnoses is rising. Despite advancements and longer survival time, the prognosis remains poor, with survival rates ranging from 3 months to over a year, depending on the diagnosis. This qualitative study provides insight into the patients' needs, experiences, and perspectives upon BM diagnosis. The aim of the study was to explore how patients experience being diagnosed with BM, their care and follow-up, and how BM impacts their lives and concerns. Methods A qualitative study using longitudinal semi-structured interviews with patients recently diagnosed with first-time BM. Participants were recruited from one Norwegian hospital, with interviews conducted at 3 intervals over 4 months. Inclusion criteria included age ≥18, verified BM diagnosis, and ability to consent and participate in interviews. Inductive thematic analyses were performed to identify overarching themes. Results Twenty-two patients participated, with interviews revealing 4 themes: (1) BM as either an additional burden or more of the same, (2) trust in the healthcare system despite unmet needs, (3) distancing from illness, and (4) acceptance of and adjustment to symptom burden. Patients expressed varied emotional responses, practical challenges, and evolving information needs over time. Conclusion Patients diagnosed with BM face multifaceted challenges. A patient-centered approach, emphasizing clear communication, symptom management, and tailored care, is essential. Understanding patient experiences can help healthcare providers offer personalized care. Continued research is needed to address the unique needs of this population and improve care practices.