Health Related Quality of Life of Patients With Abdominal Wall Defects
Health Related Quality of Life of Patients With Abdominal Wall Defects
Examination of the health-related quality of life of patients operated on due to congenital
 defects of the abdominal wall after birth with the questionnaires KINDL, SDQ and SF-36.
Data of all patients with a congenital abdominal wall defect (CAWD) undergoing surgical
 repair between 1996 and 2011 in the Department of Pediatric Surgery of the Clinic for General
 Surgery, Visceral, Vascular and Pediatric Surgery of the Saarland University Medical Center
 in Homburg were retrieved from surgical health records. Up to 2001 these records were paper
 based and later on electronically available (SAP enhancement package 7 for SAP ERP 6.0: 2013,
 Walldorf, Germany). Except epidemiological data the type of disease, data concerning birth
 details, pre- and postnatal course, treatment, weight and growth development have been
 collected electronically.

 Gastroschisis or omphalocele can be simple or complex. The investigators defined complex as
 involvement of stenosis, atresia, ischemia, volvulus or perforation, closed or vanishing
 gastroschisis, and chromosomal anomalies. Giant omphalocele was considered as complex as
 well. The type of the primary operative procedure, primary closure of the defect or other
 (patch plastic etc.), was also noted. The implementation of silo technique with delayed
 primary closure was regarded as primary closure.

 A prospective analysis was conducted by a survey with age-related questionnaires to
 investigate the patient´s HrQoL. The study protocol was approved by the ethical board of
 Aerztekammer of Saarland (Nr. 206/2013). Informed consent was given by all participating
 patients or their guardians.

 The data collection was carried out by telephone interview, personal interview or by regular
 mail. The interview was always conducted by the same person, a medical student (KK). The data
 was collected using age related questionnaires. Together with the collection of clinical data
 the investigators used the validated questionnaires KINDL, SDQ and SF-36.

 The KINDL questionnaire (www.KINDL.org) is a specifically developed questionnaire for
 children, which was developed to assess the HrQoL of life of children and adolescents. The
 reference values were published as part of the study "The Children and Youth Health Survey
 (KIGGS)" by the Robert Koch Institute, Berlin, Germany and covers the health data of 17.641
 children and adolescents in Germany aged 0-17 years.

 The SDQ (Strengths and Difficulties Questionnaire) is the second questionnaire that was used.
 The investigators used the Woerner adjustment of the SDQ as it was transferred to a German
 cohort.

 Since there are also some adult patients in the patient collective, the investigators have
 also integrated the SF-36, which was developed for adolescents and adult patients.

 The SF-36 is an internationally recognized and widely used questionnaire for the assessment
 of health-related quality of life. It records eight different dimensions (= subscales) of
 quality of life: physical functioning, physical role function, pain, general health
 perception, vitality, social functioning, emotional role function and psychological
 well-being. Additionally, the overall physical sum score and overall psychological sum score
 are listed. German reference values are available as a reference for the SF-36.

 In addition, disease specific questions were asked. These included somatic and clinical data
 about gastrointestinal function, cosmetic aspects and scars, problems during pregnancy of the
 child, actual clinical health status and psycho-social development. Answers were given as
 precise numbers or rated according to the following LIKERT-scale with these possibilities
 "never-seldom-sometimes-often-always".

 All data were collected and processed in an Excel spreadsheet (Microsoft® Excel®, Microsoft
 Corporation, Redmond, Washington, USA). The statistical analysis was carried out with SPSS
 (IBM® SPSS® Statistics, Version 25, International Business Machines Corporation (IBM),
 Armonk, New York, USA) and Excel as well.
Inclusion Criteria:

 -  Congenital abdominal wall defect

 -  Surgically corrected in our department

 -  Survivor

 Exclusion Criteria:

 -  Not surgically corrected in our department

 -  Non-Survivor