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ETOILE : A Feasibility Study in Pediatric Patient Education

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Assistance Publique - Hôpitaux de Paris

关键词

抽象

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.

描述

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.

日期

最后验证: 04/30/2020
首次提交: 05/10/2020
提交的预估入学人数: 05/18/2020
首次发布: 05/21/2020
上次提交的更新: 05/18/2020
最近更新发布: 05/21/2020
实际学习开始日期: 06/01/2020
预计主要完成日期: 12/01/2020
预计完成日期: 06/01/2021

状况或疾病

Leukemia, Lymphoblastic

干预/治疗

Behavioral: ETOILE therapeutic education

-

手臂组

干预/治疗
Experimental: ETOILE 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.
Behavioral: ETOILE 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.

资格标准

有资格学习的性别All
接受健康志愿者
标准

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,

结果

主要结果指标

1. Feasibility of the ETOILE program [6 months]

number of patients which joined the programme compared to number of patients referred

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