Two year survival after malignant cerebral glioma: patient and relative reports of handicap, psychiatric symptoms and rehabilitation

Purpose : To describe patient outcomes and contact with rehabilitation services two years after the diagnosis of malignant cerebral glioma. Methods :Across-sectional interview study of patients treated two years previously between 1990-1992 at six London hospitals. Twenty-two of 181 treated patients were found alive (12%). Fifteen were well enough to approach and 12 male patients (aged 28-60 years) and ten relatives (9 female, 1 male) could be seen by 1994. Semi-structured home interviews carried out separately with patients and relatives assessed return to previous work or activity, patient and relative reports of handicap, psychiatric symptoms, estimated percentage drop in verbal and non-verbal performance and contact with rehabilitation services. Results : Using accounts of return to work or normal activity two years after treatment, five patients were classed as broadly 'active' and seven as 'inactive'. The 'active' group appeared to have few physical or cognitive problems or were able to adapt their work around these. Disagreement between patients and relatives about handicap, patient and relative psychiatric symptoms and severe neuropsychological deficit appeared to cluster in the 'inactive group'. No patient had been formally referred for rehabilitation. Conclusions: Patient outcome,in terms of managing work and everyday activities, can be very good for some two-year survivors. For others, patient and relative accounts and neuropsychological testing may disclose a range of problems. Such inquiry might suggest referral for rehabilitation or other support.