|dc.description.abstract||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
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.||en_US