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Evaluation of Therapeutic Adherence Among Patients Followed in the Department of Hereditary Metabolic Diseases at Necker Hospital
Sponsor: Assistance Publique - Hôpitaux de Paris
Summary
The purpose of this study is to evaluate treatment adherence among patients followed in the Department of Inherited Metabolic Diseases at Necker Hospital, in order to assess the need for implementing a therapeutic education workshop focused on medication adherence.
Key Details
Gender
All
Age Range
7 Years - 20 Years
Study Type
OBSERVATIONAL
Enrollment
200
Start Date
2026-02-23
Completion Date
2028-02-23
Last Updated
2026-03-10
Healthy Volunteers
No
Conditions
Interventions
Questionnaire
A pseudonymized questionnaire assessing treatment adherence, understanding of the illness, knowledge of medications, and the number of oral medications taken is given to patients and/or their parents during a follow-up visit, whether in a consultation, day hospital, or conventional hospitalization. It is completed by parents and children aged 7 and older, as well as by adolescents and young adults. The responses will not be disclosed to the physicians in the department.
Calculation of the metabolic balance score
For patients with urea cycle deficiency, a metabolic balance score will be calculated independently from retrospective data from the medical record, in the last two years preceding the completion of the questionnaire.
Locations (1)
Hôpital Necker-Enfants Malades
Paris, France