Symptom experience in patients with primary brain tumours: a longitudinal exploratory study

Abstract

Purpose: This study was undertaken to further understand the symptom experience and the impact of symptoms in daily life in people treated for brain tumours.

Methods: A qualitative prospective longitudinal design was used with 9 people who were interviewed over 4 time points (soon after diagnosis, 3 months, 6 months and 12-months post-diagnosis), providing 21 interviews in total.

Results: Key issues for these participants were ongoing fatigue, memory loss and inability to drive. Fatalistic views about the outcomes of their disease were the norm. Participants made adjustments to their lives to accommodate their functional limitations. These included making home alterations, introducing regular exercise to their lives and using complementary therapies. Their expectations did not always match with the reality of the situation, which made several participants angry and dissatisfied with health care professionals.

Conclusions: Issues of quality of life are paramount in this group of poor prognosis patients, therefore, health professionals should provide preparatory information to patients on what to expect from the illness and its treatments. Health professionals should also assist patients to manage debilitating symptoms such as fatigue and cognitive impairment.