Stephan-Carlier A, Facione J, Speyer E, Rumilly E, Paysant J
Service de médecine physique et de réadaptation, hôpital d'instruction des armées Legouest, 27, avenue de Plantières, BP 90001, 57077 Metz cedex 03, France.
Service de médecine physique et de réadaptation, hôpital d'instruction des armées Legouest, 27, avenue de Plantières, BP 90001, 57077 Metz cedex 03, France.
Ann Phys Rehabil Med. 2014 Dec;57(9-10):640-52. doi: 10.1016/j.rehab.2014.09.012. Epub 2014 Oct 18.
If the benefits of single-event multilevel surgery (SEMS) in ambulatory children with cerebral palsy have already been validated, especially in terms of functional outcomes, fewer studies have evaluated SEMS in terms of quality of life and satisfaction with surgical outcomes, especially pertaining to the opinions of children and their family. The objectives of this study were to confront the perceptions of parents and the experience of their operated children in terms of quality of life and surgical outcomes.
This was an observational, descriptive, single-center study conducted in a regional Pediatric Physical Medicine and Rehabilitation (PM&R) center, which is considered a reference center in this region of France. The subjects recruited were ambulatory children with cerebral palsy (CP) who had SEMS between 2009 and 2011, and one of their parents. The specific "child" and "parent" CP-related modules of the DISABKIDS questionnaire were used to assess these children's quality of life post-surgery. Perceptions of parents and children regarding gait evolution and satisfaction with surgical outcomes were analyzed via a questionnaire developed by the author. Regarding quality of life and surgical outcomes, the correlation between the perception of parents and experience of children was estimated using the intraclass correlation coefficient (ICC) or prevalence-adjusted bias-adjusted kappa values (PABAK).
Twelve children (83% of them boys) and their parents participated in the study. For the DISABKIDS questionnaire, a moderate correlation was found regarding functional impact (ICC=0.58; P<0.0178) but a high correlation was reported for the communication item of the questionnaire (ICC=0.73; P=0.0025). Regarding satisfaction with surgical outcomes, results showed a good correlation (PABAK=0.64).
Concerning quality of life and satisfaction with surgical outcomes, our study showed a good or even high correlation between parents' perceptions and their child's experience. It is however essential to privilege the child's opinion whenever possible.
如果单节段多级手术（SEMS）对非卧床脑瘫儿童的益处已经得到验证，尤其是在功能结局方面，那么从生活质量和对手术结局的满意度方面评估SEMS的研究较少，特别是涉及儿童及其家庭的意见。本研究的目的是在生活质量和手术结局方面对比父母的看法和接受手术的孩子的体验。
这是一项在地区儿科物理医学与康复（PM&R）中心进行的观察性、描述性、单中心研究，该中心被认为是法国该地区的参考中心。招募的受试者为2009年至2011年间接受SEMS的非卧床脑瘫（CP）儿童及其父母之一。使用残疾儿童问卷中特定的与“儿童”和“父母”CP相关的模块来评估这些儿童术后的生活质量。通过作者编制的问卷分析父母和孩子对步态演变的看法以及对手术结局的满意度。关于生活质量和手术结局，使用组内相关系数（ICC）或患病率调整偏差调整kappa值（PABAK）估计父母看法与孩子体验之间的相关性。
12名儿童（其中83%为男孩）及其父母参与了研究。对于残疾儿童问卷，在功能影响方面发现中度相关性（ICC = 0.58；P < 0.0178），但在问卷的沟通项目方面报告了高度相关性（ICC = 0.73；P = 0.0025）。关于对手术结局的满意度，结果显示相关性良好（PABAK = 0.64）。
关于生活质量和对手术结局的满意度，我们的研究表明父母的看法与孩子的体验之间存在良好甚至高度的相关性。然而，尽可能优先考虑孩子的意见至关重要。
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