How was life after treatment of a malignant brain tumour?

The malignant glioma is a severe disease with an unfavourable prognosis. As ide from a few case studies, the knowledge of the victimised patients' live s from diagnosis to death is mainly restricted to studies assessing functio nal status and rating quality of life by means of questionnaires. From a cl inician's perspective this knowledge is not sufficient. By introducing the concepts 'time of everyday life' and 'time of disease', the purpose of this paper is to supplement with descriptive knowledge of clinical value. Twent y-eight patients with malignant gliomas and their spouses were followed dur ing the course of the disease by repeated interviews. The time after treatm ent was then judged as representing, 'time of everyday life' or 'time of di sease'. Life after treatment turned out to be quite varied. To slightly mor e than a third of the patients', life-continuity was lost, experiencing onl y 'time of disease'. Among the others who were judged to experience 'time o f everyday life' and who were of working age, nearly two-thirds were able t o resume work or studies on a part-time basis. In the total sample, the mea n 'time of everyday life' turned out to be nearly equal to 'time of disease ', 6.1 and 5.4 months, respectively. The findings are illustrated by case d escriptions and the conceptualisation of time into 'everyday life' and 'dis ease' is proposed as meriting further study. (C) 2000 Elsevier Science Ltd. All rights reserved.