Therapeutic Education Using an Internet Application in Hereditary Ichthyosis
- Conditions
- Ichthyosis
- 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
- 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 Fractional use in each domain (educational sessions) 6 months "WebIchtyose" application use time by the patient for group and individual educational sessions
Number of lost to follow-up patients 9 months Number of lost to follow-up patients
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
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 (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
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
CHU Toulouse, Hôpital Larrey🇫🇷Toulouse, France