| Titre : | Quality of life of adolescents with neuromuscular diseases : here’s what they say |
| contenu dans : | |
| Auteurs : | Congrès international de myologie 2008 (International Congress of Myology 2008; 26-30 mai 2008; Marseille, France) ; Vuillerot C ; Hodgkinson I ; Bérard C ; Ecochard R ; d'Anjou MC ; Commare MC |
| Type de document : | Article |
| Année de publication : | 2008 |
| Pages : | p. 584 |
| Langues: | Anglais |
| Résumé : | Little is known about quality of life of adolescents with neuromuscular diseases or the factors that influence it. We searched whether physical impairment, physical disability, and medical complications were predictors of low quality of life. Motor function, health, orthopaedic status, and rehabilitation were assessed in 43 adolescents with neuromuscular diseases (age: 13.8±1.7; sex ratio 2.9/1). Quality of life was measured with the VSP-A (Vécu Santé Perçu par l’Adolescent), a validated health-related quality of life self-perception test. A multiple linear mixed regression related quality of life to impairment, disability, and respiratory status. Comparisons were made with data from an age/sex-matched healthy population. On the average, the VSP-A scores in diseased adolescents were: i) similar to those of the healthy population as regards vitality, body image, relationships with parents and friends, and physical and psychological well-being ; ii) higher as regards school performance (68 vs. 52.8%) and relationships with teachers (67.4 vs. 43.2%); iii) lower as regards leisure activities (43.9 vs. 60.9%). Physical disability and physical impairment were not significantly associated with seven out of the nine domains but scores for leisure activities and vitality were significantly associated with physical impairment (p=0,001 and p=0,006 respectively). Adolescents with ventilatory support did not express lower scores than non-ventilated ones (67.7% +/- 11 vs. 62.9%+/-15, p=0.39). These surprising results should question our medical, educational, and rehabilitation practices. Already well-managed disabled adolescents should benefit from a less compassionate and more daring and dynamic interpersonal contacts. Conclusions - These surprising results should question our medical, educational, and rehabilitation practices. Already well-managed disabled adolescents should benefit from a less compassionate and more daring and dynamic interpersonal contacts. |
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