OPEN Research Support

Head of Surgical department
Mark Bremholm Ellebæk
Department of Surgery, Odense University Hospital OUH

Projekt styring
Projekt status    Open
Data indsamlingsdatoer
Start 01.02.2023  
Slut 30.11.2024  

Long-term quality of life in patients born with an anorectal malformation

Short summary

The occurrence of an anorectal malformation (ARM) at birth is linked with various complications in later life. In order to evaluate the long-term quality of life, we send out two questionnaires, regarding health and quality of life. The responses compares to information gathered from their medical records, such as the type of malformation, primary surgical approach, complications, and other congenital abnormalities or malformations.


Anorectal malformations (ARM) occur in 1 out of 5000 births. It is a congenital problem, with a wide spectrum of disorders seen in both sexes, but it is slightly more common in males. Based on precise anatomical abnormalities the malformations can be described with the Krickenbeck classification. Anorectal malformations comes from an abnormal development of the hindgut, allantois and mullerian duct which results in complete or partial malformations. In the early 1980s the "posterior sagittal anoretoplasty - PSARP" by deVries and Peña was introduced. This surgical technique gave a better management of the complex anomaly. Later on minimally invasive techniques, including laparoscopy and robotic surgery were developed to reconstruct the ARMs. Being born with an anorectal malformation is associated with many short- and long-term complications: Anal stricture, wound infection and dehiscence, mislocated rectum and anus, rectal prolapse, remnant of original fistula, postoperative fistulas, constipation, fecal incontinence, and effect on sexual function. Also the urinary and renal functions can be affected, and abnormalities occur in approximately 40%. Most common is renal dysgenesis, and others include ectopic kidney and duplex kidneys. Vesicoureteral reflux is reported in one third of children. Due to the area of surgery, iatrogenic injury like urethral tears, urethral strictures, vas deferens injuries, and ureteric injuries are reported. The long term quality of life among patients born with an ARM is still limited and lacks further research in both children, adolescent and adults in different cultural backgrounds. Therefore, we are undertaking this study to assess the long-term quality of life in patients born with an anorectal malformation in Denmark.

Description of the cohort

Patients born with an anorectal malformation, who were primary, treated at Odense University Hospital between 1885-2015.

Data and biological material

Data about type of malformation, type of primary surgery for anorectal malformation, age at surgery, complications, other known congenital abnormalities or malformations, are collected from the patients journal. Surveys regarding general health (SF-36) and a disease specific questionnaire for anorectal malformations and Hirschsprungs. (HALQ), are send out to the included patients.