Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations —A Scoping Review

Conclusion So far, only a few studies with small sample sizes focus on parental HrQoL in pediatric surgical patients with rare congenital malformations. To gain a comprehensive understanding of the impact of a rare congenital malformation on HrQoL of all family members, it is necessary to consider three main aspects: (1) to use both generic- and disease-specific instruments measuring HrQoL of the young patient as well as his/her parents and siblings in larger sample sizes, (2) to collect longitudinal data, and (3) to consider a mixed-method approach. [...] Georg Thieme Verlag KG Stuttgart · New YorkArticle in Thieme eJournals: Table of contents  |  Abstract  |  Full text

Source: European Journal of Pediatric Surgery - May 17, 2020 Category: Surgery Authors: Witt, Stefanie Bl ömeke, Janika Bullinger, Monika Dingemann, Jens Quitmann, Julia Tags: Review Article Source Type: research