An interventional study of Therapeutic patient education program in Ichthyosis, sponsored by University Hospital, Toulouse. Completed at 1 site in France. Open to participants aged 15 Years to 60 Years. Per ClinicalTrials.gov, last updated 2024-04-12.
Sponsored by University Hospital, Toulouse · Not applicable, Interventional, and Supportive care
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.
33 studies on the registry are indexed under Ichthyosis; 11 are open to participants now.
This study's enrollment of 42 is above the median of 26 across 23 interventional studies indexed under Ichthyosis.
Browse Ichthyosis studies →University Hospital, Toulouse is the lead sponsor of 807 studies on the registry; 209 are open to participants now.
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Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
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
Also known as: WebIchtyose
Global use
percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months
Time frame: 6 months
Fractional use in each domain (educational sessions)
"WebIchtyose" application use time by the patient for group and individual educational sessions
Time frame: 6 months
Fractional use in each domain (continuous educational follow-up)
"WebIchtyose" application use time by the patient for the continuous educational follow-up
Time frame: 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
Time frame: 6 months
Fractional use in each domain (questionnaires)
"WebIchtyose" application use time by the patient for the filling of the questionnaires
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 6 months
Number of relaunches
How many times the nurse relaunches the patient to obtain the assessment questionnaires
Time frame: 2 months, 4 months and 6 months
Number of non-received questionnaires
Number of non-received questionnaires after relaunch
Time frame: 2 months, 4 months and 6 months
Number of lost to follow-up patients
Number of lost to follow-up patients
Time frame: 9 months
Patient acceptability
Acceptability questionnaire to be completed by the patient
Time frame: 6 months
Educational team acceptability
Acceptability questionnaire to be completed by each member of the educational team
Time frame: 6 months
Attractiveness
Application attractiveness questionnaire completed by the patient
Time frame: 6 months
Quality of life before and after treatment
Quality of life questionnaire for hereditary ichthyosis (IQoL-32)
Time frame: 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
Time frame: Inclusion and 6 months
Knowledge about disease and treatments
Questionnaire of knowledge about disease and treatments
Time frame: Inclusion and 6 months
Self-care skills
Questionnaire of self-care skills
Time frame: 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.
Time frame: 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.
Time frame: Inclusion and 6 months
This study is completed, as verified in Apr 2024. You cannot join it, but the record below documents what was studied.
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