Therapeutic Education Using an Internet Application in Hereditary Ichthyosis

Study Overview
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Brief Summary
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The main purpose is to evaluate the feasibility (global use) of a therapeutic patient education program using a specific web application in patients with hereditary ichthyosis.

Official Title
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Evaluation of the Feasibility and Effect of Therapeutic Education Sessions Using an Internet Application in Hereditary Ichthyosis

Conditions
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Ichthyosis

Intervention / Treatment
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* Other: Therapeutic patient education program


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient with hereditary ichthyosis, according to the classification established during the 2009 consensus conference Who has given his informed consent form Who is affiliated to a social security system Exclusion Criteria: Patient who has already participated in a therapeutic patient education program for the hereditary ichthyosis Unable to connect or use a computer tool Impossibility to be present at the only face-to-face session Patient who is not available for the collective educational session Patient with little or no motivation to follow a therapeutic patient education program (motivation evaluated by the educational team by phone call before inclusion) Patient not mastering the French language Person under legal protection (guardianship, curators or safeguard of justice)

Ages Eligible for Study
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Minimum Age: 15 Years
Maximum Age: 60 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Therapeutic Patient Education program<br>All included patients will follow a Therapeutic Patient Education program dedicated to the hereditary ichthyosis and using a web application, WebIchtyose | Other: Therapeutic patient education program<br>* WebIchtyose is a specific therapeutic patient education program for patients with hereditary Ichthyosis targeting the problems of each patient by means of a personalized follow-up and a constant interaction between the patient and the educational team<br>* Other names: WebIchtyose;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Global use | percentage of patients who have used the WebIchtyose application for at least 8 hours during 6 months | 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Fractional use in each domain (educational sessions) | WebIchtyose application use time by the patient for group and individual educational sessions | 6 months | 
| Fractional use in each domain (continuous educational follow-up) | WebIchtyose application use time by the patient for the continuous educational follow-up | 6 months | 
| Fractional use in each domain (consultation) | WebIchtyose application use time by the patient for the consultation of the Frequently Asked Questions area and of patient information documents made available on the application | 6 months | 
| Fractional use in each domain (questionnaires) | WebIchtyose application use time by the patient for the filling of the questionnaires | 6 months | 
| Fractional use in each domain | WebIchtyose application use time by the patient for group and individual educational sessions, the continuous educational follow-up, the consultation of the Frequently Asked Questions area and of patient information documents made available on the application | 6 months | 
| Difficulty of individual application registration | Difficulty of registration questionnaire completed for each patient jointly by the patient and the educational team at the end of the face-to-face inclusion visit | Baseline | 
| Difficulties of use in everyday life by the patient | Questionnaire completed for each patient jointly by the patient at the end of the program | 6 months | 
| Number of exchanges | Number of exchanges necessary between the educational team and the patient to set a date for the conduct of the individual educational sessions | 3 months and 5 months | 
| Response time | Response time of the educational team following a request from the patient as part of the educational follow-up | 6 months | 
| Number of relaunches | How many times the nurse relaunches the patient to obtain the assessment questionnaires | 2 months, 4 months and 6 months | 
| Number of non-received questionnaires | Number of non-received questionnaires after relaunch | 2 months, 4 months and 6 months | 
| Number of lost to follow-up patients | Number of lost to follow-up patients | 9 months | 
| Patient acceptability | Acceptability questionnaire to be completed by the patient | 6 months | 
| Educational team acceptability | Acceptability questionnaire to be completed by each member of the educational team | 6 months | 
| Attractiveness | Application attractiveness questionnaire completed by the patient | 6 months | 
| Quality of life before and after treatment | Quality of life questionnaire for hereditary ichthyosis (IQoL-32) | Inclusion, 6 months and 9 months | 
| Self-assessment of cutaneous severity | Self-assessment of cutaneous severity according to an analogic visual scale for pain, pruritus, erythema, squama | Inclusion and 6 months | 
| Knowledge about disease and treatments | Questionnaire of knowledge about disease and treatments | Inclusion and 6 months | 
| Self-care skills | Questionnaire of self-care skills | Inclusion and 6 months | 
| Self-esteem | Questionnaire about self-esteem: Rosenberg scale. For each item of the questionnaire, the modality answers are : 1 (totally disagree), 2 (quite disagree), 3 (quite agree) and 4 (totally disagree). The total score (/ 40) is calculated by adding the scores obtained for each item. | Inclusion and 6 months | 
| Coping scale | Coping with health injuries and problem (Endler 1998). For each item of the questionnaire, the modality answers are: 1 (not at all), 2 (a little), 3 (moderately), 4 (often) and 5 (a lot).The total score (/ 160) is calculated by adding the scores obtained for each item. | Inclusion and 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Hereditary ichthyosis