Hospices Civils de Lyon, Hôpital Femme-Mère-Enfant, L'Escale, Service de Médecine Physique et de Réadaptation Pédiatrique, F-69677 Bron, France.
J Adolesc Health. 2010 Jan;46(1):70-6. doi: 10.1016/j.jadohealth.2009.05.005. Epub 2009 Jul 12.
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, 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.
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).
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.
对于患有神经肌肉疾病的青少年的生活质量及其影响因素，我们知之甚少。我们研究了身体损伤、身体残疾和医疗并发症是否是生活质量低的预测因素。
我们评估了 43 名患有神经肌肉疾病的青少年（平均年龄 13.8 岁，标准差 1.7 岁；性别比例 2.9/1）的运动功能、健康状况、骨科状况和康复情况。使用 VSP-A（青少年感知健康状况）评估生活质量，VSP-A 是一种经过验证的与健康相关的青少年自我感知生活质量测试。一项混合线性回归将生活质量与损伤、残疾和呼吸状况联系起来。并将结果与年龄/性别匹配的非残疾组进行了比较。
一般来说，身体残疾的青少年的 VSP-A 评分在以下方面与非残疾组相似：（1）在活力、身体形象、与父母和朋友的关系以及身心健康方面与非残疾组相似；（2）在学业成绩（得分 68 比 52.8）和与教师的关系（67.4 比 43.2）方面更高；（3）在休闲活动方面（43.9 比 60.9）更低。身体残疾和身体损伤与 VSP-A 的九个维度中的七个没有负相关，但身体损伤与休闲活动和活力有负相关（p<0.001 和 p<0.01）。需要通气支持的青少年的评分并不比不需要通气支持的青少年低（67.7+/-11 比 62.9+/-15，p=0.39）。
这些令人惊讶的结果应该促使我们质疑我们的医疗、教育和康复实践。已经管理良好的残疾青少年应该从更少同情但更勇敢和更有活力的人际接触中受益。
