e-ETPichtyose: Therapeutic Education Using an Internet Application in Hereditary Ichthyosis
Study Details
Study Description
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
N/A |
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Experimental: 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 |
Other: Therapeutic patient education program
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
Other Names:
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Outcome Measures
Primary Outcome Measures
- Global use [6 months]
percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months
Secondary Outcome Measures
- Fractional use in each domain (educational sessions) [6 months]
"WebIchtyose" application use time by the patient for group and individual educational sessions
- Fractional use in each domain (continuous educational follow-up) [6 months]
"WebIchtyose" application use time by the patient for the continuous educational follow-up
- 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 (questionnaires) [6 months]
"WebIchtyose" application use time by the patient for the filling of the questionnaires
- 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
- 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
- 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
- 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
- Response time [6 months]
Response time of the educational team following a request from the patient as part of the educational follow-up
- Number of relaunches [2 months, 4 months and 6 months]
How many times the nurse relaunches the patient to obtain the assessment questionnaires
- Number of non-received questionnaires [2 months, 4 months and 6 months]
Number of non-received questionnaires after relaunch
- 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
- 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
- Knowledge about disease and treatments [Inclusion and 6 months]
Questionnaire of knowledge about disease and treatments
- 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.
- 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.
Eligibility Criteria
Criteria
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
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Unable to connect or use a computer tool
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Impossibility to be present at the only face-to-face session
-
Patient who is not available for the collective educational session
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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)
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | CHU Toulouse, Hôpital Larrey | Toulouse | France | 31059 |
Sponsors and Collaborators
- University Hospital, Toulouse
Investigators
- Principal Investigator: Juliette Mazereeuw-Hautier, MD, University Hospital, Toulouse
Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- RC31/16/8765