1272P Living with brain metastases: A longitudinal qualitative study of patient experiences from time of diagnosis

Abstract

Significant improvements in diagnostics and anticancer treatments have led to an increased incidence of brain metastases (BMs). Patients with BMs experience several symptoms such as headache, nausea, imbalance, seizures, cognitive impairment and fatigue, in addition to impaired quality of life (QoL) and everyday functioning. Research on patient perspectives on living with BMs is scarce. This longitudinal interview study investigates patient experiences with diagnosis and life with BMs. These data can inform health care providers how to best approach BM-patients and their needs. Semi-structured interviews with 20 purposively sampled newly diagnosed BM-patients were conducted at baseline, 2 and 4 months in an ongoing prospective BM-study. The interview guide focused on patient experiences of: receiving the BM diagnosis, participation in treatment decision-making, everyday functioning, symptoms, worries and needs. Transcripts were analysed applying a qualitative longitudinal trajectory approach. were comprised in the following 4 themes that were applicable across the 3 time points: The Brain; an additional burden or more of the same? – A majority of the patients did not seem particularly concerned about the location of the metastatic disease. Trust – Patients have confidence in the treatment they receive and are satisfied with their care in spite of not being involved in treatment decisions. Still, some lack information about diagnosis, treatment, side effects and prognosis, and might have unanswered questions they do not openly address. Distancing - Instead of openly dwelling about their diagnosis or the future, patients actively try to live as usual. The new normal - Patients adapt to the situation and report living well, even when experiencing burdensome symptoms and substantial limitations in daily activities. Life of BM-patients is considerably affected. Although patients cling to normalcy, impaired functioning, unmet information needs and inadequate symptom control may impair their QoL. Health care providers should actively explore each patient’s perspectives, needs and symptoms, and tailor individual treatment and care.