NCT04382820

Psychosocial Situation of Children With Rare (Congenital) Pediatric Surgical Diseases and Their Families

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 167 (actual)
• Sponsor: Universitätsklinikum Hamburg-Eppendorf · Academic / Other
• Sex: All
• Age: 1 Day – 21 Years
• Healthy volunteers: Accepted

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/her siblings. The aim of the present research project is to examine the psychosocial burden of the children with rare (congenital) pediatric surgical diseases and their family in order to draw attention to a possible psychosocial care gap in this population.

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 the rare diseases that are included are diaphragmatic hernia, anorectal malformations, esophageal atresia, Hirschsprung's disease and biliary atresia. In order to have a comparative sample, additional data of a matched control group are collected. Central standardized psychosocial outcomes will be assessed from the perspectives of the parents, the affected child and the siblings.

Conditions

• Rare Diseases

Timeline

• Start date: 2020-04-01
• Primary completion: 2021-04-01
• Completion: 2021-04-01
• First posted: 2020-05-11
• Last updated: 2021-12-09

Locations

1 site across 1 country: Germany