Issue |
Educ Ther Patient/Ther Patient Educ
Volume 11, Number 1, juin 2019
|
|
---|---|---|
Article Number | 10202 | |
Number of page(s) | 14 | |
Section | Études / Studies | |
DOI | https://doi.org/10.1051/tpe/2019002 | |
Published online | 28 March 2019 |
Original Article/Article original
Therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome: feasibility and satisfaction of the participants
Programme d’éducation thérapeutique pour les patients avec un syndrome d’Ehlers-Danlos hypermobile : faisabilité et satisfaction des participants
1
Centre-Médico-Chirurgical de Réadaptation des Massues – Croix-Rouge française,
92 rue Edmond Locard,
69322
Lyon Cedex 05, France
2
Hospices Civils de Lyon – Pôle Information Médicale Evaluation Recherche,
162 avenue Lacassagne,
69424
Lyon Cedex 03, France
* Corresponding author: chaleat-valayer.e@cmcr-massues.com
Received:
31
August
2018
Accepted:
1
February
2019
Objectives: To describe a therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome, called PrEduSED and to evaluate its feasibility and efficiency in terms of satisfaction and impact on disease management in daily life. Methods: Prospective observational study. Evaluation before, after and 6 months after PrEduSED, consisted in: CSQ-F, SF-12, HAD, QIC, FIS, Zarit, Quiz and Vignettes (knowledge and skills about the disease), satisfaction questionnaire, Goal Attainment Scales. Results: Nineteen (19) patients (89% women, mean age: 39.2) were included and 9 relatives (78% men, mean age: 44.1). Participants were generally highly satisfied with the content and the organization of PrEduSED. Knowledge about the EDS and skills significantly improved (p < 0.001 for patients, p = 0.016 for relatives). QIC score improved significantly (p = 0.047) and FIS score also for the relationships domain (p = 0.05). At the end of the program, 69% of participants thought they had achieved their goals (mainly about acquiring knowledge and managing their treatment) beyond what they had hoped for; at 6 months, 54% felt they had achieved them beyond what they hoped for. Conclusions: Real success of PrEduSED for patients with hypermobile EDS in terms of recognition, satisfaction, increase of knowledge about the disease and adaptative skills.
Résumé
Objectifs : Décrire un programme d’éducation thérapeutique PrEduSED destiné aux patients porteurs d’un syndrome d’Ehlers-Danlos hypermobile, évaluer sa faisabilité et son efficacité en termes de satisfaction et d’impact sur la gestion de la maladie dans la vie quotidienne. Méthodes : Étude prospective en soins courants. Évaluation avant, après et à 6 mois basée sur : CSQ-F, SF-12, HAD, QIC, FIS, Zarit, Quiz et Vignettes (connaissance/compétences), questionnaire de satisfaction, échelles de réalisation des objectifs. Résultats : Dix-neuf (19) patients inclus (89 % femmes, âge moyen : 39.2) et 9 aidants (78 % hommes, âge moyen : 44.1). Satisfaction généralement importante par rapport au PrEduSED (contenu/organisation). Amélioration significative des connaissances et compétences (p < 0,001 patients, p = 0,016 aidants). Amélioration significative du QIC (p = 0,047) et du FIS pour le domaine des relations sociales (p = 0,05). À la fin du programme, 69 % des participants pensaient avoir atteint leurs objectifs (principalement connaissance et gestion du traitement) au-delà de ce qu’ils espéraient ; à 6 mois, ce taux reste à 54 %. Conclusions : Réel succès du PrEduSED pour les patients avec un SED hypermobile en termes de reconnaissance, satisfaction, amélioration des connaissances à propos de la maladie et des compétences d’adaptation.
Key words: Ehlers-Danlos syndrome / hypermobility / therapeutic education
Mots clés : syndrome d’Ehlers-Danlos / hypermobilité / éducation thérapeutique
© EDP Sciences, SETE, 2019
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