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

The wound care of children with Epidermolysis Bullosa as a source of stress for their parents and themselves. - Stress caused by EB

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON45516

Enrollment

350

Registered

2017-08-03

Start date

2018-01-22

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

blistering diseases

Interventions

children

Epidermolysis Bullosa

Stress

Wound care

Eligibility

Age

2 Years to 64 Years

Inclusion criteria

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

Exclusion criteria: 1. Age of patients> 25 years

Design outcomes

Primary

Measure	Time frame
The most important parameters are HRQoL (child) and HRQoL (parent), and experienced stress regarding the wound care (pain and anxiety)	—

Countries

The Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)