Need for transition medicine in pediatric surgery – health related quality of life in adolescents and young adults with congenital malformations

Author:

Uecker Marie1,Ure Benno1,Quitmann Julia Hannah2,Dingemann Jens1ORCID

Affiliation:

1. Center of Pediatric Surgery , Hannover Medical School and Bult Children’s Hospital , Hannover , Germany

2. Department of Medical Psychology , University Medical Center Hamburg-Eppendorf , Hamburg , Germany

Abstract

Abstract Survival rates of patients with visceral congenital malformations have increased considerably. However, long-term morbidity in these patients is high. In the last decades, these circumstances have led to a shift in goals of caretakers and researchers with a new focus on patients’ perspectives and long-term morbidity. Health-related quality of life (HrQoL) is the most commonly used patient-reported outcome measure to assess the impact of chronic symptoms on patients’ everyday lives. Most pediatric surgical conditions can cause a significantly decreased HrQoL in affected patients compared to the healthy population. In order to guarantee life-long care and to minimize the impact on HrQoL a regular interdisciplinary follow-up is obligatory. The period of transition from child-centered to adult-oriented medicine represents a critical phase in the long-term care of these complex patients. This scoping review aims to summarize relevant pediatric surgical conditions focusing on long-term-morbidity and HrQoL assessment in order to demonstrate the necessity for a well-structured and standardized transition for pediatric surgical patients.

Publisher

Walter de Gruyter GmbH

Subject

Surgery

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