title: [Short bowel syndrome in Germany. Estimated prevalence and standard of care].
abstract: OBJECTIVE
  As data about prevalence and standard of care in short bowel syndrome (SBS) are not available for Germany, this study estimated the prevalence and assessed the medical infrastructure to potentially improve care of SBS patients.
  
  
  METHODS
  In a validated approach for prevalence estimation in rare diseases, a randomized census of 478 size-stratified hospitals with surgical, internal medicine and pediatric departments was conducted to estimate SBS prevalence. The number of SBS patients, specialized outpatient clinics and caregiver expertise were assessed.
  
  
  RESULTS
  The response rate was 85 % of randomized hospitals (405/478). Strata-derived estimation yielded a total of 2,808 SBS patients in Germany for 2011/2012 (95 % CI: 1750.3865), translating into a prevalence estimation for 34/million inhabitants (95 % CI: 21.47). Overall expertise in SBS treatment was only rated "satisfactory" by most caregivers. While 86 specialized outpatient clinics were identified, there was no central registry to access these resources.
  
  
  CONCLUSIONS
  Short bowel syndrome, with a newly estimated prevalence of 34/million inhabitants is not a very rare medical condition in Germany. The interdisciplinary approach needed for optimal care for SBS patients would be greatly facilitated by a central registry.
authors.affiliation: Klinik für Allgemein-, Viszeral-, Gefäß- und Thoraxchirurgie, Universitätsklinikum Bonn, Sigmund-Freud Str. 25, 53127, Bonn, Deutschland.
authors.forename: M W
authors.initials: MW
authors.lastname: von Websky
authors.forename: U
authors.initials: U
authors.lastname: Liermann
authors.forename: B M
authors.initials: BM
authors.lastname: Buchholz
authors.forename: K
authors.initials: K
authors.lastname: Kitamura
authors.forename: A
authors.initials: A
authors.lastname: Pascher
authors.forename: G
authors.initials: G
authors.lastname: Lamprecht
authors.forename: R
authors.initials: R
authors.lastname: Fimmers
authors.forename: J C
authors.initials: JC
authors.lastname: Kalff
authors.forename: N
authors.initials: N
authors.lastname: Schäfer
mesh_terms: D000328:Adult; D002648:Child; D002983:Clinical Competence / Q000592:standards; D003299:Cooperative Behavior; D003625:Data Collection; D005858:Germany; D006801:Humans; D033183:Interdisciplinary Communication; D010348:Patient Care Team / Q000592:standards; D017060:Patient Satisfaction; D011788:Quality of Life; D012778:Short Bowel Syndrome / Q000453:epidemiology* / Q000628:therapy*; D013038:Specialization; D059039:Standard of Care / Q000592:standards*