The quality of survival of patients with malignant cerebal glioma following radiotherapy
Objective- To describe survival, disability and morbidity after radiotherapy for malignant glioma and explore patient and relative experience. Design - Home follow-up of patients and relative over up to 24 months and of relatives after bereavement. Setting - Six London hospitals Subjects- 92 patients receiving radiotherapy (83 recruited at diagnosis; 9 after radiotherapy) and 85 relatives. 56 bereaved relatives. Main outcome measures- Survival, time free from disability, and changes in disability after treatment assessed, or deduced retrospectively, using interviewer observation, patient and relative reports, case note review and discussion with medical staff. A semi-structured interview designed for the study assessed awareness of the likely prognosis, distress, dissatisfaction with radiotherapy and perception of severe problems in everyday life. Results - 6,12 and 24 month survivals were 70%, 39% and 10%. Age, World Health Organisation clinical performance status, extent of surgery, and epilepsy each influenced survival. The Medical Research Council prognostic index was also significantly related to survival. Multivariate analysis showed that initial clinical performance status was the most important aspect of the index. Most (80%;4 9/61) patients with a clinical performance status of 0,1 or 2 lived at least 6 months before becoming permanently disabled. Of those with an initial good clinical performance status( 0-2) who survived 6 months after radiotherapy 69% (36/52) experienced either clinical deterioration or severe tiredness after treatment. Severely disabled patients (clinical performance status 3 or 4) gained little benefit. 75 patients and 66 relatives were interviewed at diagnosis, 59 patients after radiotherapy and 27 after deterioration. As they began radiotherapy most patients understood that they suffered from a brain tumour (95% ;7 1/75), but only one quarter (19/75) seemed fully aware of the poor prognosis. Others were unaware (43%; 32/75) or only partly aware (32%; 24/75). The more aware patients were more distressed. Relatives were three times more likely to be aware of the prognosis (67%; 44/66) and were more distressed. Although 39% (29/75) of patients initially made negative comments about radiotherapy, only 17% (13/75) were completely dissatisfied. The decision to accept radiotherapy could be discussed directly with 19 fully aware patients. Twelve found radiotherapy acceptable if it were medically advised or if it improved survival. Assessed by their own reports of symptoms only 40% of patients improved or achieved a period of stability, yet dissatisfaction with treatment did not increase. Bereaved relatives' judgements about quality of life and the value of radiotherapy were strongly related to the patient's initial disability and distress. Short periods of survival between six and 12 months were felt worthwhile. Conclusions- Severely disabled patients gain little benefit from radiotherapy and those not so disabled may experience considerable adverse effects. The lack of awareness of the prognosis, however, makes it difficult to explore with patients directly the possible trade off between quality and length of life. Relatives were more aware, more distressed and often concerned to protect patients from full awareness. However most aware patients accepted radiotherapy for the chance of improved survival and bereaved relatives valued relatively small periods of survival free from disability and distress. Conceptualising these questions as rational choices ignores therefore the social and emotional context of life threatening disease.