Therapeutic Education Using an Internet Application in Hereditary Ichthyosis

University Hospital, Toulouse42 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

Conditions

Ichthyosis

Interventions

Therapeutic patient education programOTHER

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

Eligibility

Sex: ALLMin age: 15 YearsMax age: 60 Years

Medical Language ↔ Plain English

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)

Locations (1)

CHU Toulouse, Hôpital Larrey

Toulouse, France

Outcomes

Primary Outcomes

Global use

percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months

Time frame: 6 months

Secondary Outcomes

Fractional use in each domain (educational sessions)

"WebIchtyose" application use time by the patient for group and individual educational sessions

Time frame: 6 months

Fractional use in each domain (continuous educational follow-up)

"WebIchtyose" application use time by the patient for the continuous educational follow-up

Time frame: 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

Time frame: 6 months

Fractional use in each domain (questionnaires)

"WebIchtyose" application use time by the patient for the filling of the questionnaires

Time frame: 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

Time frame: 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

Data from ClinicalTrials.gov

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Time frame: 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

Time frame: 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

Time frame: 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

Time frame: 6 months

Number of relaunches

How many times the nurse relaunches the patient to obtain the assessment questionnaires

Time frame: 2 months, 4 months and 6 months

Number of non-received questionnaires

Number of non-received questionnaires after relaunch

Time frame: 2 months, 4 months and 6 months

Number of lost to follow-up patients

Time frame: 9 months

Patient acceptability

Acceptability questionnaire to be completed by the patient

Time frame: 6 months

Educational team acceptability

Acceptability questionnaire to be completed by each member of the educational team

Time frame: 6 months

Attractiveness

Application attractiveness questionnaire completed by the patient

Time frame: 6 months

Quality of life before and after treatment

Quality of life questionnaire for hereditary ichthyosis (IQoL-32)

Time frame: 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