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Assessment of subjective health and health-related quality of life in persons with acquired or degenerative brain injury

von Steinbuechel, Nicolea,b,c; Richter, Sylviaa; Morawetz, Carmena,d; Riemsma, Robe

doi: 10.1097/01.wco.0000194140.56429.75
Trauma and rehabilitation

Purpose of review Health-related quality of life is a new outcome variable in neurology. Several generic measures aim at assessing this variable in adults with neurological diseases. Disease-specific measures are still rare; however, individuals with neurological diseases frequently suffer from cognitive impairment, yet are often excluded from health-related quality of life investigations. When included in such studies, cognitive functioning is not monitored via neuropsychological evaluation, possibly leading to methodological problems. Papers from May 2004 until July 2005 are reviewed with respect to psychometric quality and information about persons after traumatic brain injury, stroke, Parkinson's disease or dementia.

Recent findings Several new cross-sectional and longitudinal outcome studies are reviewed. The Medical Outcome Study Short Form with 36 items, the Sickness Impact Profile and the Nottingham Health Profile were identified as the most frequently used measures in neurology. For traumatic brain injury, two new generic instrument validations (Life Satisfaction Index-A, Subjective Quality of Life Profile) and one internationally validated disease-specific development (Quality of Life after Brain Injury) were found; for stroke, one disease-specific tool (Burden of Stroke Scale) was identified. In Parkinson's disease, the disease-specific health-related quality of life measure Parkinson's Disease Questionnaire-39 is well validated. In dementia, three dementia-specific instruments (Quality of Life for Dementia, Quality of Life in Late-Stage Dementia Scale and Quality of Life in Alzheimer's Disease Scale) seem to be valid.

Summary In neurology, only a few measures have been developed and validated for respondents with cognitive impairment, often showing poorer validity results than studies involving healthy persons. Health-related quality of life assessment should therefore be validated in the specific diseases and, if necessary, combined with a neuropsychological evaluation and a disease-specific health-related quality of life measure.

aMedical Psychology

bDepartment of Psychogeriatrics, University Clinic, Geneva, Switzerland

cFaculty of Psychology and Gerontopsychology

dMR-Research in Neurology and Psychiatry, Georg-August-University, Göttingen, Germany

eCentre for Reviews and Dissemination, University of York, York, UK

Correspondence to Nicole von Steinbüchel, Medical Psychology, Georg-August-University, Waldweg 37, 37073 Göttingen, Germany Tel: +49 551 398192; fax: +49 551 398194; e-mail:

© 2005 Lippincott Williams & Wilkins, Inc.