Prevalence estimation of anorectal malformations using German diagnosis related groups system

Abstract

Without major registries, true prevalence of rare congenital diseases is not known. Estimations for occurrence of anorectal malformation (ARM) are based on monitoring centers and epidemiological studies. The new German economical system for payment of inpatient care (G-DRG) obligates the report of each hospitalization, including diagnoses and procedures. These codes and classifications originally developed for morbidity statistics are now misused for economical purposes. Is there an epidemiological use? We present a new method to estimate national wide prevalence rate of congenital malformations exemplarily for imperforated anus. Due to the new German DRG-system, treatment data collections of the years 2002-2005 are freely accessible. This method is applicable if a life saving surgery is mandatory for newborns and has to be ciphered by specific codes. Overall, in German hospitals 1,012 children below 1 year of age are surgically treated with a reconstructive anorectal surgery during the period of 4 years. In the same time 2,817,388 babies are born in Germany. Hence the national wide prevalence rate is about 3.6 (95% CI: 3.4-3.8) per 10,000 or 1:2,784 for all different types of anal atresia requiring surgery. Main ICD-10 diagnosis Q42 was given twice this rate, probably due to at least two hospitalizations in the newborn period. The economic data of the G-DRG system can be used to estimate yearly prevalence of some rare congenital diseases in Germany, in case of specific surgical procedures. It may be a useful supplement to smaller regional registries because of larger size. Further calculations for other epidemiological questions have to be faced.

Parental risk factors and anorectal malformations: systematic review and meta-analysis

“…Approximately 1 in 2,500 to 1 in 5,000 new born babies are affected [1-3]. Different degrees of severity are distinguished, ranging from mild anal stenosis over anal atresia with or without fistula to persistent cloaca or even cloacal exstrophy [4].…”

Research perspectives in the etiology of congenital anorectal malformations using data of the International Consortium on Anorectal Malformations: evidence for risk factors across different populations

“…These outcomes often deteriorate with age, which emphasizes the need for long-term follow-up and psychosocial treatment [2, 3]. As experience concerning ARM is scattered in many different hospitals in most European countries [4], regional differences in clinical outcome and quality of life have been reported. Moreover, case comparison is difficult, as a detailed diagnosis according to Krickenbeck [5] is often not stated in discharge letters.…”

Self-efficacy, postoperative care satisfaction, body image and sexual functioning in ARM patients

“…The greatest increase in self-efficacy occurs when the model and the observer are peers. In several countries parents and families association of ARM patients exist [14,19,20 Vereniging Anusatresie-Dutch patients organization]. These contexts may be the eligible settings where mastery and modeling programs can take place since people have the possibility to share the same experiences and may acquire new skills, learning from other participants that have found and challenge the same difficulties.…”