Evaluation of quality of life in individuals with severe chronic motor ă disability: A major challenge

Marie-Christine Rousseau, Karine Baumstarck, Thierry Billette Villemeur and Pascal Auquier ()
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Marie-Christine Rousseau: SPMC - Santé Publique et maladies Chroniques : Qualité de vie Concepts, Usages et Limites, Déterminants - AMU - Aix Marseille Université - APHM - Assistance Publique - Hôpitaux de Marseille, Fédération des Hôpitaux de Polyhandicap et Multihandicap Hôpital San Salvadour - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP)
Karine Baumstarck: AMU - Aix Marseille Université
Pascal Auquier: SPMC - Santé Publique et maladies Chroniques : Qualité de vie Concepts, Usages et Limites, Déterminants - AMU - Aix Marseille Université - APHM - Assistance Publique - Hôpitaux de Marseille

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Abstract: Diverse conditions causing a very heavy and chronic motor disability, ă such as an advanced amyotrophic lateral, advanced form of multiple ă sclerosis, high spinal cord injury or a locked-in syndrom, are now ă getting better medical care and benefit of life support technology with ă consequent prolonged survival. Quality of life (QoL) assessment is being ă considered increasingly important to globally apprehend their general ă well-being. However, the motor disability that affects them appears as a ă substantial limitation for the assessment of their QoL and consequently ă a major challenge for all the community that carries an interest for ă them. This review discussed several avenues to provide to patients and ă caregivers, clinicians and researchers, and health decision making ă authority: i) elements to determine the most appropriate QoL measure ă with regard to the interest of patient's point of view, the QoL ă instruments suitable for this category of patients and their ă acceptability, ii) some arguments of the clinical relevance and accuracy ă of QoL assessment: interpretations of the questionnaires, QoL ă determinants, particularity of QoL evaluation for individuals with ă cognitive impairment and the caregivers perceptions of patients QoL. In ă conclusion, evaluation of QoL in patients with severe chronic motor ă handicap is a challenge of major interest, with major ethical issues. It ă needs to use adapted QoL scales and longitudinal following because of ă adaptive phenomena to the degree of handicap.

Keywords: Quality (search for similar items in EconPapers)
Date: 2016-05
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Citations: View citations in EconPapers (1)

Published in Intractable & Rare Diseases Research, 2016, 5 (2), pp.83-89. ⟨10.5582/irdr.2016.01017⟩

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Persistent link: https://EconPapers.repec.org/RePEc:hal:journl:hal-01482526

DOI: 10.5582/irdr.2016.01017

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