Status:
COMPLETED
Psychosocial Situation of Children With Rare (Congenital) Pediatric Surgical Diseases and Their Families
Lead Sponsor:
Universitätsklinikum Hamburg-Eppendorf
Conditions:
Rare Diseases
Eligibility:
All Genders
1-21 years
Brief Summary
Families of children with rare diseases (i.e., not more than 5 out of 10.000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and his/h...
Detailed Description
The central objective of the cross-sectional study is to show the psychosocial supply gap for families with children and adolescents affected by rare diseases in the field of pediatric surgery. Among ...
Eligibility Criteria
Inclusion
- Inclusion Criteria (families of rare disease):
- Family with at least one child between 0 and 21 years with a rare pediatric surgical disease.
- Consent to participate in the study.
- Sufficient knowledge of the German language of parents and children.
- Exclusion Criteria (families of rare disease):
- Severe acute physical, mental and/or cognitive impairment of the child, so that the questionnaire survey does not appear possible and/or unreasonable at this stage.
- Inclusion Criteria (control group):
- Family with at least one child between 0 and 21 years who have undergone a surgical procedure in the first 3 years of life that does not cause chronic complaints
- Consent to participate in the study.
- Sufficient knowledge of the German language of parents and children.
- Exclusion Criteria (control group):
- \- Families of children with a congenital or chronic disease.
Exclusion
Key Trial Info
Start Date :
April 1 2020
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
April 1 2021
Estimated Enrollment :
167 Patients enrolled
Trial Details
Trial ID
NCT04382820
Start Date
April 1 2020
End Date
April 1 2021
Last Update
December 9 2021
Active Locations (1)
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1
University Medical Center Hamburg-Eppendorf
Hamburg, Germany, 20246