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

Résumé En

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.