Résumé :
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Most clinicians, researchers, health care advocates, policy makers, and even third-party payers agree - on a conceptual level - that the measurement of QoL is an important consideration in evaluating the effectiveness of medical rehabilitation intervention. However, the methodologies that can reliably and sensitively measure changes in QoL across disability groups and cultures, and weigh both objective and subjective perspectives, have only to take shape within rehabilitation research. This statement was made in 2003 but it still applies in 2008. In my opinion, it is always relevant to ask people about their experiences with health and quality of life, QoL, defined as "the degree to which persons perceive themselves able to function physically, emotionally, socially. In contrast to Health Status, which is an objective measurement." Developments in the use of the QoL instruments as an effective measure for clinical studies of neuromuscular rehabilitation show an increasing interest patients' experience with the consequences of treatment. Methodological problems render the existing health-related quality of life (HRQoL) scales insufficient as a measure in clinical studies and especially in rehabilitation research. The White Paper on rehabilitation in Denmark defines the purpose of rehabilitation as: Optimizing the patient's function, participation and meaningful life (QoL). In knowledge development of questionnaires for use in neurorehabilitation, the ICF classification could be used as a point of departure as a means to ensure that each instrument is limited to a single ICF dimension or the QoL domain. In doing so the sum score of each individual scale will be statistically relevant and measurement errors reduced. The lecture will present some of the rehabilitation methods developed by RCfM through 25 years and give examples of the QoL measurements we have carried out.
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