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Open Access Highly Accessed Debate

Quality of Life as an outcome in Alzheimer's disease and other dementias- obstacles and goals

Matthias W Riepe1*, Thomas Mittendorf2, Hans Förstl3, Lutz Frölich4, Martin Haupt5, Reiner Leidl6, Christoph Vauth2 and Matthias Graf von der Schulenburg2

Author Affiliations

1 Department of Psychiatry and Psychotherapy II, Mental Health & Old Age Psychiatry, Ulm University, Ulm, Germany

2 Center for Health Economics, Leibniz University Hannover, Hannover, Germany

3 Department of Psychiatry and Psychotherapy, Technische Universität München, Munich, Germany

4 Department of Geriatric Psychiatry, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, Mannheim, Germany

5 Neurological Research Institute Düsseldorf, Düsseldorf, Germany

6 Institute for Health Economics and Health Care Management, Helmholtz Zentrum München, Munich, Germany

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BMC Neurology 2009, 9:47  doi:10.1186/1471-2377-9-47

Published: 25 August 2009

Abstract

Background

The number of individuals at risk for dementia will probably increase in ageing societies as will the array of preventive and therapeutic options, both however within limited economic resources. For economic and medical purposes valid instruments are required to assess disease processes and the efficacy of therapeutic interventions for different forms and stages of illness. In principal, the impact of illness and success of an intervention can be assessed with biomedical variables, e.g. severity of symptoms or frequency of complications of a disease. However, this does not allow clear judgement on clinical relevance or comparison across different diseases.

Discussion

Outcome model variables such as quality of life (QoL) or health care resource utilization require the patient to appraise their own well-being or third parties to set preferences. In Alzheimer's disease and other dementias the evaluation process performed by the patient is subject to the disease process itself because over progress of the disease neuroanatomical structures are affected that mediate evaluation processes.

Summary

Published research and methodological considerations thus lead to the conclusion that current QoL-instruments, which have been useful in other contexts, are ill-suited and insufficiently validated to play a major role in dementia research, decision making and resource allocation. New models integrating biomedical and outcome variables need to be developed in order to meet the upcoming medical and economic challenges.