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Perceived effectiveness, tolerance of cares in children and adults with cerebral palsy.
Auteur(s) : Houx, Laetitia Saudreau, Helene Galien, Philippe Pons, Christelle Roquet, Marion Garlantézec, Ronan Brochard, Sylvain
Auteurs secondaires : Service de médecine physique et de réadaptation ; Centre Hospitalier Régional Universitaire de Brest (CHRU Brest) Centre Mutualiste de Rééducation et de Réadaptation Fonctionnelles de KERPAPE [Ploemeur] (CMRRF) ; Centre Mutualiste de Rééducation et de Réadaptation Fonctionnelles de Kerpape Médecine Physique et de Réadaptation [Rennes] (Pôle Saint-Hélier) Laboratoire de Traitement de l'Information Medicale (LaTIM) ; Université européenne de Bretagne (UEB) - Télécom Bretagne - Centre Hospitalier Régional Universitaire de Brest (CHRU Brest) - Université de Brest (UBO) - Institut National de la Santé et de la Recherche Médicale (INSERM) - Institut Mines-Télécom [Paris] Centre de Perharidy Institut de recherche, santé, environnement et travail [Rennes] (Irset) ; Université d'Angers (UA) - Université des Antilles et de la Guyane (UAG) - Université de Rennes 1 (UR1) - École des Hautes Études en Santé Publique [EHESP] (EHESP) - Institut National de la Santé et de la Recherche Médicale (INSERM) - Structure Fédérative de Recherche en Biologie et Santé de Rennes ( Biosit : Biologie - Santé - Innovation Technologique ) Université de Brest (UBO)

Éditeur(s) : HAL CCSD
Résumé : International audience
OBJECTIVE: A better understanding of the perception of the rehabilitative and medical care's by persons with cerebral palsy (CP) and their families may help in providing better adherence to these cares. The main objective of this study was to assess overall satisfaction, self-perception of effectiveness and tolerance of the rehabilitative and medical cares in individuals with CP. MATERIAL AND METHODS: This was a cross-sectional questionnaire-based study. A total of 950 questionnaires were sent to French Britain children and adults with CP. Perceived effectiveness and tolerance were evaluated for each types of care using a Likert scale from 1 to 7 and overall satisfaction by a visual analog scale. Comparison of means and uni-and-multivariate analyzes for correlation analysis were carried out. RESULTS: A total of 512 (53.9%) questionnaires were analyzed; 230 (44.9%) were children and 54% were walkers (GMFCS I, II or III). The overall satisfaction was 6.83/10 (SD 2.21). Orthoptic, orthosis and physical therapy were reported to be the most effective cares (5.34/5.30/5.29) while botulinum toxins, intrathecal baclofen, and speech therapy the least effective (4.42/4.52/5.02). Intrathecal baclofen, orthosis and botulinum toxin were the less well-tolerated therapies (4.75/5.11/5.28). Antiepileptic drugs were reported to be the most effective and best-tolerated drug contrary to analgesics. Overall, satisfaction was inversely correlated to the GMFCS in the multivariate analysis (P=0.013). The perceived effectiveness of occupational therapy, botulinum toxin injections and physiotherapy are inversely related to GMFCS in the univariate analyzes. The tolerance and effectiveness of the orthosis have a positive correlation with the GMFCS in the uni-and-multivariate analyzes. DISCUSSION/CONCLUSION: This study shows a good overall satisfaction on medical and paramedical care but highlights a large discrepancy between user self-perception and evidence base medicine. More communication about the therapies between professionals and individuals with cerebral palsy is needed and comparing opinions of patients and their families to literature can give us the keys to improve communication around these therapies.
Annals of Physical and Rehabilitation Medicine

hal-01477212
https://hal-univ-rennes1.archives-ouvertes.fr/hal-01477212
DOI : 10.1016/j.rehab.2016.07.014
PUBMED : 27676935

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