Leukemia, Lymphoblastic
Conditions
Keywords
therapeutic education
Brief summary
Feasibility study of a therapeutic education program for the patient and his carers, intended for children suffering from acute lymphoblastic leukemia or having received an allograft of hematopoietic stem cells in the pediatric hematology department of Robert Debré hospital ( Paris, APHP). In addition to feasibility, the intermediate effectiveness of the program will be assessed.
Detailed description
This is a pilot feasibility study, of the quasi-experimental before-after, non-randomized, mono-centric type. Feasibility is assessed on process criteria (adoption, reach implementation, satisfaction). Intermediate effectiveness is assessed on the skill level of patients and their caregivers, before, after and at a distance from education. Patients' anxiety levels will also be assessed before, after and at a distance from the program. The level of health literacy will be assessed at the start of the study.
Interventions
BEHAVIORALETOILE therapeutic education
ETOILE is a patient education program, in accordance with French recommendations, which offers to patients and caregivers the opportunity to follow a customized educational training on their disease. Better quality of life and enhanced autonomy are the aim of this program.
Sponsors
Assistance Publique - Hôpitaux de Paris
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
1 Days to 18 Years
Healthy volunteers
No
Inclusion criteria
* Criteria relating to the population studied: child between 0 and 18 years old, followed at Robert Debré hospital (Paris), by a doctor from the hematology and immunology department * Of which the 2 holders of parental authority have been informed and have signed the consent * Having 1 or 2 caregivers available to accompany him during FTE sessions * 1 to 2 of their adult caregivers will be eligible for the ETOILE program and will be included in the study after their consent. * Child with acute lymphoblastic leukemia, treated at Robert Debré Hospital (Paris), in the induction or consolidation phase * Child going to receive or having received an allograft of hematopoietic stem cells at the Robert Debré hospital (Paris) * Beneficiaries of a social security scheme or entitled to it,
Exclusion criteria
* Child not mastering the French language, * Child with physical or cognitive disability to participate in the program,
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility of the ETOILE program | 6 months | number of patients which joined the programme compared to number of patients referred |
Countries
France
Outcome results
None listed