Therapeutic Education Using an Internet Application in Hereditary Ichthyosis
- Conditions
- Ichthyosis
- Interventions
- Other: Therapeutic patient education program
- Registration Number
- NCT03641261
- Lead Sponsor
- University Hospital, Toulouse
- Brief Summary
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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 42
- 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
- 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)
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SINGLE_GROUP
- Arm && Interventions
Group Intervention Description Therapeutic Patient Education program Therapeutic patient education program All included patients will follow a Therapeutic Patient Education program dedicated to the hereditary ichthyosis and using a web application, WebIchtyose
- Primary Outcome Measures
Name Time Method Global use 6 months percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months
- Secondary Outcome Measures
Name Time Method Number of lost to follow-up patients 9 months Number of lost to follow-up patients
Fractional use in each domain (educational sessions) 6 months "WebIchtyose" application use time by the patient for group and individual educational sessions
Patient acceptability 6 months Acceptability questionnaire to be completed by the patient
Educational team acceptability 6 months Acceptability questionnaire to be completed by each member of the educational team
Coping scale Inclusion and 6 months 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.
Fractional use in each domain (questionnaires) 6 months "WebIchtyose" application use time by the patient for the filling of the questionnaires
Difficulties of use in everyday life by the patient 6 months Questionnaire completed for each patient jointly by the patient at the end of the program
Response time 6 months Response time of the educational team following a request from the patient as part of the educational follow-up
Knowledge about disease and treatments Inclusion and 6 months Questionnaire of knowledge about disease and treatments
Fractional use in each domain (consultation) 6 months "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
Number of relaunches 2 months, 4 months and 6 months How many times the nurse relaunches the patient to obtain the assessment questionnaires
Fractional use in each domain (continuous educational follow-up) 6 months "WebIchtyose" application use time by the patient for the continuous educational follow-up
Difficulty of individual application registration Baseline 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
Number of non-received questionnaires 2 months, 4 months and 6 months Number of non-received questionnaires after relaunch
Attractiveness 6 months Application attractiveness questionnaire completed by the patient
Quality of life before and after treatment Inclusion, 6 months and 9 months Quality of life questionnaire for hereditary ichthyosis (IQoL-32)
Self-assessment of cutaneous severity Inclusion and 6 months Self-assessment of cutaneous severity according to an analogic visual scale for pain, pruritus, erythema, squama
Self-care skills Inclusion and 6 months Questionnaire of self-care skills
Self-esteem Inclusion and 6 months 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.
Fractional use in each domain 6 months "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
Number of exchanges 3 months and 5 months Number of exchanges necessary between the educational team and the patient to set a date for the conduct of the individual educational sessions
Trial Locations
- Locations (1)
CHU Toulouse, Hôpital Larrey
🇫🇷Toulouse, France