title: Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge.
abstract: Diverse conditions causing a very heavy and chronic motor disability, such as an advanced amyotrophic lateral, advanced form of multiple sclerosis, high spinal cord injury or a locked-in syndrom, are now getting better medical care and benefit of life support technology with consequent prolonged survival. Quality of life (QoL) assessment is being considered increasingly important to globally apprehend their general well-being. However, the motor disability that affects them appears as a substantial limitation for the assessment of their QoL and consequently a major challenge for all the community that carries an interest for them. This review discussed several avenues to provide to patients and caregivers, clinicians and researchers, and health decision making authority: i) elements to determine the most appropriate QoL measure with regard to the interest of patient's point of view, the QoL instruments suitable for this category of patients and their acceptability, ii) some arguments of the clinical relevance and accuracy of QoL assessment: interpretations of the questionnaires, QoL determinants, particularity of QoL evaluation for individuals with cognitive impairment and the caregivers perceptions of patients QoL. In conclusion, evaluation of QoL in patients with severe chronic motor handicap is a challenge of major interest, with major ethical issues. It needs to use adapted QoL scales and longitudinal following because of adaptive phenomena to the degree of handicap.
authors.affiliation: Hôpital San Salvadour (Assistance Publique Hôpitaux de Paris), Paris, France.
authors.forename: Marie-Christine
authors.initials: MC
authors.lastname: Rousseau
authors.affiliation: EA3279 Santé Publique: Maladies Chroniques et Qualité de Vie, Faculté de Médecine Timone Marseille, Paris, France.
authors.forename: Karine
authors.initials: K
authors.lastname: Baumstarck
authors.affiliation: Hôpital Trousseau (Assistance Publique Hôpitaux de Paris), Paris, France.
authors.forename: Thierry
authors.initials: T
authors.lastname: Billette de Villemeur
authors.affiliation: EA3279 Santé Publique: Maladies Chroniques et Qualité de Vie, Faculté de Médecine Timone Marseille, Paris, France.
authors.forename: Pascal
authors.initials: P
authors.lastname: Auquier
keywords: Motor handicap; caregivers; death; evaluation; quality of life