Self-perception of quality of life by adolescents with neuromuscular diseases.
OBJECTIVE
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.


METHODS
Motor function, health, orthopedic status, and rehabilitation were assessed in 43 adolescents with neuromuscular diseases (mean age, 13.8 years, standard deviation 1.7 year; sex ratio 2.9/1). Quality of life was measured with the VSP-A ("Vécu Santé Perçu par l'Adolescent"; self-perceived health state in adolescents), a validated health-related quality of life self-perception test. A mixed linear regression related quality of life to impairment, disability, and respiratory status. Comparisons were made with results from an age/sex-matched nondisabled group.


RESULTS
On the average, the VSP-A scores in physically disabled adolescents were: (1) similar to those of the nondisabled group with regard to vitality, body image, relationships with parents and friends, and physical and psychological well-being; (2) higher with regard to school performance (score 68 vs. 52.8) and relationships with teachers (67.4 vs. 43.2); and (3) lower with regard to leisure activities (43.9 vs. 60.9). Physical disability and physical impairment were not negatively associated with seven of the nine VSP-A dimensions, but physical impairment was negatively associated with leisure activities and vitality (p < .001 and p < .01, respectively). Adolescents with ventilatory support did not express lower scores than adolescents not requiring ventilatory support (67.7+/-11 vs. 62.9+/-15, p=.39).


CONCLUSIONS
These surprising results should lead us question our medical, educational, and rehabilitation practices. Already well-managed disabled adolescents should benefit from less compassionate but more daring and dynamic interpersonal contacts.
Vuillerot
Carole
C
Hospices Civils de Lyon, Hôpital Femme-Mère-Enfant, L'Escale, Service de Médecine Physique et de Réadaptation Pédiatrique, F-69677 Bron, France. carole.vuillerot@chu-lyon.fr
Hodgkinson
Isabelle
I
Bissery
Alvine
A
Schott-Pethelaz
Anne-Marie
AM
Iwaz
Jean
J
Ecochard
René
R
D'Anjou
Marie-Charlotte
MC
Commare
Marie-Christine
MC
Berard
Carole
C
D000293:Adolescent; D005260:Female; D005602:France; D006304:Health Status; D006801:Humans; D016014:Linear Models; D008297:Male; D009468:Neuromuscular Diseases / Q000503:physiopathology / Q000523:psychology* / Q000534:rehabilitation; D011788:Quality of Life; D012649:Self Concept; D011795:Surveys and Questionnaires