The wound care of children with Epidermolysis Bullosa as a source of stress for their parents and themselves.

Completed

• Conditions: blistering diseases; 10040789

• Registration Number: NL-OMON45516
• Lead Sponsor: Dermatologie

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Last Update Posted: 28 February 2024

Recruitment & Eligibility

• Status: Completed
• Sex: Not specified
• Target Recruitment: 350

Inclusion Criteria

1. Parent of a child with EB (EBS, JEB, DEB or Kindler syndrome)
2. Age of children / adolescents (boys and girls) between 0-25 years
3. The parent has the primary responsibility for the wound care
4. The child is registered as a patient at the Center for Blistering Diseases at the University Medical Center Groningen.

Exclusion Criteria

1. Age of patients> 25 years

Study & Design

• Study Type: Observational non invasive
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>The most important parameters are HRQoL (child) and HRQoL (parent), and<br /><br>experienced stress regarding the wound care (pain and anxiety)</p><br>

Secondary Outcome Measures

Name	Time	Method
<p>Not applicable</p><br>