Quality of Life in Middle-aged and Older Patients With Congenital Ichthyosis
NCT ID: NCT05610306
Last Updated: 2025-10-01
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
20 participants
OBSERVATIONAL
2022-11-14
2023-07-31
Brief Summary
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The main question it aims to answer are:
• What is the impact of ichthyosis on the biological-psychological-social quality of life in adult and elderly patients with inherited ichthyosis ?
Participants will take part in individual interviews in which the investigators will explore if and how ichthyosis impacts their quality of life. Examples of such questions are whether participants experience pain, experience struggles in their personal or professional lives, with sports activities or if participants experience a financial burden.
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Detailed Description
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Secondary research questions include:
1. What is the impact of ichthyosis on the biological quality of life; by analysing physical complaints, adverse events and drug management in patients with long-term medication use of both topical and systemic treatments, and discussing the sexual health and reproductive challenges?
2. What is the impact of ichthyosis on the psychological quality of life; by examining patients' self-esteem and any clinical symptoms of body dysmorphic disorder, and mental and emotional complaints such as concerns about their future care?
3. What is the impact of ichthyosis on the social quality of life; by analysing interpersonal relationships, social support dynamics, societal costs and awareness, and career opportunities?
Furthermore the investigators aim to discover knowledge gaps in current patient management and possible areas of improvement in patient care towards health professionals.
Conditions
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Study Design
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OTHER
PROSPECTIVE
Study Groups
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Inherited ichthyosis patients
Interviews
Qualitative interview
Qualitative interviews to gain insight into the impact of ichthyosis on the biological, psychological, and social quality of life in adult and elderly patients.
Interventions
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Qualitative interview
Qualitative interviews to gain insight into the impact of ichthyosis on the biological, psychological, and social quality of life in adult and elderly patients.
Eligibility Criteria
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Inclusion Criteria
* Clinical or genetic confirmed variant of congenital ichthyosis
Exclusion Criteria
* ichthyosis vulgaris
* another primary chronic skin condition besides ichthyosis
* patients who are not able to read/speak Dutch
30 Years
ALL
No
Sponsors
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Maastricht University Medical Center
OTHER
Responsible Party
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Principal Investigators
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Antoni H Gostynski, MD, PhD
Role: PRINCIPAL_INVESTIGATOR
MAASTRICHT UMC+
Locations
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Maastricht University Medical Centre +
Maastricht, , Netherlands
Countries
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Provided Documents
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Document Type: Study Protocol
Document Type: Statistical Analysis Plan
Other Identifiers
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METC 2020-3226A3
Identifier Type: -
Identifier Source: org_study_id
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