Ichthyosis
Conditions
Keywords
Hereditary ichthyosis
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.
Interventions
OTHERTherapeutic 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
Sponsors
University Hospital, Toulouse
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
15 Years to 60 Years
Healthy volunteers
No
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)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Global use | 6 months | percentage of patients who have used the WebIchtyose application for at least 8 hours during 6 months |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| 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 |
| 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 |
| 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. |
| Number of lost to follow-up patients | 9 months | Number of lost to follow-up patients |
Countries
France
Outcome results
None listed