Abstract

Objective: To explore the views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma.

Design: Semistructured interviews with the bereaved relatives of 56 previously studied patients with glioma.

Setting: Patients treated at six London hospitals from 1990 to 1992 surviving between one and 46 months (median, eight).

Subjects: Fifty six relatives (44 spouses, 12 others) seen four to six months after bereavement and 20 again at 13 months.

Main outcome measures: Views about quality of life and satisfaction with radiotherapy.

Results: Relatives described quality of life as “good or acceptable” when patients carried on some normal activities or enjoyed social relationships. They described restricted and dependent states, constant deterioration, or loss of social interaction as giving “poor or unacceptable” quality of life. Length of time lived in such states also appeared important. Relatives’ views of good or acceptable quality of life were independently related to low initial cognitive or personality change or low distress in the patient after diagnosis, and to their subsequent survival free from physical disability for at least one month. Satisfaction with radiotherapy was related to low initial distress, some degree of surgical resection, and overall length of survival longer than six months.

Conclusions: Carefully exploring the views of bereaved relatives can bring a useful perspective to difficult treatment decisions. Their values support including disability and distress in quality of life measures, but cast doubt on the QALY-type approach of using full years of survival or time free from disability to judge whether treatments are worthwhile.