Improving Care of Prader-Willi Syndrome : Evaluation of a New Care Program Combining Adapted Physical Activity, Nutrition and Therapeutic Education (APHYNET)
Prader-Willi Syndrome, Obesity
About this trial
This is an interventional prevention trial for Prader-Willi Syndrome focused on measuring Prader Willi Syndrome, Therapeutic Education, Adapted Physical Activity, Nutrition
Eligibility Criteria
Inclusion Criteria:
- Patient between 18 and 60 years old Patient with genetically confirmed PWS
- Admitted for a 5-week stay in the Hendaye rehabilitation care unit
- Patient or legal guardian (tutor or curator) who has given written informed consent to participate in the study
- With the presence of an external relay available to coordinate the patient's journey during the protocol: family or educational referent (home)
- Affiliated with French social security except patient under AME (State medical aid)
Exclusion Criteria:
- Decompensation of a cardiorespiratory or psychiatric pathology in the 3 months prior to inclusion that required hospitalisation
- Patients whose condition may interfere with their optimal participation in the study (e.g., severe behavioural problems preventing participation in group workshops)
Sites / Locations
- Service diététique Hôpital Marin d'Hendaye- AP-HPRecruiting
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Interventional group
Standard care group
Patients will receive the usual care, with the intervention of the multidisciplinary team which defines with the patient the objectives of the stay and the inter-stay period, without "specific therapeutic education" on adapted physical activity, nutrition and eating behaviour.
Patients will benefit from the activities already proposed as part of the usual practice and in addition a multidisciplinary staff will take place in order to interpret the assessments of the patients included and to direct the patients according to their phenotypic profile towards the different programmes of adapted physical activity.