Article

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.
METHOD : 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). RESULTS: 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). CONCLUSION: 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.
CI - Copyright (c) 2014 Elsevier Masson SAS. All rights reserved.

Langue : ANGLAIS ; FRANCAIS