Psychosocial Outcome in Patients with ARM or EEC

Patients with Anorectal malformations (ARM) and the Exstrophy-Epispadias Complex (EEC) suffer from severe functional and cosmetic impairments. Therefore, this study investigates pattern, severity and causes of restrictions in their quality of life. In close cooperation with the other subprojects, the project will analyze how a specific etiological origin of ARM/EEC (genetics, prenatal factors), a specific physical outer appearance (morphology, phenotype), specific functional impairments (incontinence, sexual function, fertility), specific surgical and medical intervention strategies, specific psychosocial stress factors (e.g. fear of rejection or social exclusion), specific coping strategies and psychological adaptation processes (e.g. withdrawal), specific family characteristics (e.g. presence or absence of emotional support) increase or decrease the impact of ARM/EEC on the final quality of life in the patient. Knowledge of the particular contribution of these factors to quality of life will (a) help surgeons and physicians to tailor their interventions more closely to the true personal benefit for the patient and (b) enhance more refined interdisciplinary support and care not only for the physical health but also the psychological well-being and social integration of the patient and the family.

Project Leaders

PD Dr. Meinolf Noeker, Dipl. Psych.
Universitätsklinikum Bonn
Zentrum für Kinderheilkunde
Adenauerallee 119, 53113 Bonn

Further Cooperators

Gundi Cervero

Ekkehart Jenetzky

Nadine Zwink