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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Therapeutic Patient Education program | Experimental | All included patients will follow a Therapeutic Patient Education program dedicated to the hereditary ichthyosis and using a web application, WebIchtyose |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Therapeutic patient education program | Other | 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 |
| 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 |
| 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) |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Juliette Mazereeuw-Hautier, MD | University Hospital, Toulouse | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Toulouse, Hôpital Larrey | Toulouse | 31059 | France |
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| ID | Term |
|---|---|
| D007057 | Ichthyosis |
| ID | Term |
|---|---|
| D012868 | Skin Abnormalities |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |
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"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 |
| D007642 | Keratosis |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |