The overall prevalence and incidence of SBS are difficult to assess accurately in the absence of national registries for SBS, but they can be estimated using parenteral nutrition (PN) registries. Using PN registry data may underestimate the prevalence and incidence of SBS because not all patients with SBS require PN, and approximately 50% to 70% of patients who initially require PN are eventually weaned off it.[3]Capriati T, Mosca A, Alterio T, et al. To wean or not to wean: the role of autologous reconstructive surgery in the natural history of pediatric short bowel syndrome on behalf of Italian Society for Gastroenterology, Hepatology and Nutrition (SIGENP). Nutrients. 2020 Jul 18;12(7):2136.
https://www.doi.org/10.3390/nu12072136
http://www.ncbi.nlm.nih.gov/pubmed/32708377?tool=bestpractice.com
[4]Massironi S, Cavalcoli F, Rausa E, et al. Understanding short bowel syndrome: current status and future perspectives. Dig Liver Dis. 2020 Mar;52(3):253-61.
https://www.doi.org/10.1016/j.dld.2019.11.013
http://www.ncbi.nlm.nih.gov/pubmed/31892505?tool=bestpractice.com
A study in Finland found the prevalence of intestinal failure (including individuals with conditions other than SBS) to be 11.7 per million of the population, which is similar to other western European countries.[5]Pohju AK, Pakarinen MP, Sipponen TM. Intestinal failure in Finland: prevalence and characteristics of an adult patient population. Eur J Gastroenterol Hepatol. 2021 Dec 1;33(12):1505-10.
https://www.doi.org/10.1097/MEG.0000000000002082
http://www.ncbi.nlm.nih.gov/pubmed/33560686?tool=bestpractice.com
In the early 1990s, the Oley Foundation home PN registry for the US estimated that approximately 40,000 patients needed PN annually, with 30% of these requiring PN for SBS or its associated conditions (e.g., radiation enteritis).[6]Oley Foundation. North American home parenteral and enteral nutrition patient registry: annual report with outcome profiles 1985-1992. 1994 [internet publication].
https://cdn.ymaws.com/oley.org/resource/resmgr/PDF/Patient_Registry_AnnualRepor.pdf
In 1997, the European Society for Parenteral and Enteral Nutrition (ESPEN) Working Group carried out a survey to estimate the annual incidence of home PN for 7 European countries. They reported prevalence and annual incidence (per million), respectively, as: Denmark, 12.7 and 2.8; Netherlands, 3.7 and 3.0; UK, 3.7 and 1.2; France, 3.6 and 2.9; Belgium, 3.0 and 2.6; Portugal, 1.1 and 0.36; and Spain, 0.65 and 0.7.[7]Bakker H, Bozzetti F, Staun M, et al. Home parenteral nutrition in adults: a European multicentre survey in 1997. ESPEN-Home Artificial Nutrition Working Group. Clin Nutr. 1999 Jun;18(3):135-40.
http://www.ncbi.nlm.nih.gov/pubmed/10451476?tool=bestpractice.com
In 2012, an Italian study reported a point prevalence of home PN (for gastrointestinal disease) of approximately 11.7 per million.[8]Pironi L. Development of home artificial nutrition in Italy over a seven year period: 2005–2012. BMC Nutr. 2017 Jan;3:6.
https://link.springer.com/article/10.1186/s40795-016-0118-y
In Europe, Denmark has long been thought to have the highest number of patients receiving long-term home PN as suggested by the ESPEN study, and another Danish study (between 1996 and 2001) that reported a prevalence and annual incidence of home PN of 19.2 and 5.0 per million, respectively.[9]Ugur A, Marashdeh BH, Gottschalck I, et al. Home parenteral nutrition in Denmark in the period from 1996 to 2001. Scand J Gastroenterol. 2006 Apr;41(4):401-7.
http://www.ncbi.nlm.nih.gov/pubmed/16635907?tool=bestpractice.com
More recent data suggest that home PN is increasing in some European countries, such as the UK and Spain. In 2016, the point prevalence and annual incidence of home PN in the UK were reported to be 21.0 and 5.0 per million, respectively (although these data also included those receiving only intravenous fluids).[10]British Association of Parenteral and Enteral Nutrition. BANS report 2016: home artificial nutrition support in the UK 2005-2015. 2016 [internet publication].
http://www.bapen.org.uk/images/pdfs/reports/bans-report-2016.pdf
In 2013, the point prevalence of home PN in Spain was reported to be approximately 4.0 per million.[11]Wanden-Berghe C, Cuerda Compes JC, Burgos Peláez R, et al. A home and ambulatory artificial nutrition (NADYA) group report, home parenteral nutrition in Spain, 2013. Nutr Hosp. 2015 Jun 1;31(6):2533-8.
http://www.aulamedica.es/nh/pdf/9052.pdf
http://www.ncbi.nlm.nih.gov/pubmed/26040362?tool=bestpractice.com
A number of epidemiological studies have focused on SBS in infants. In one US study of over 12,000 infants, the incidence of surgery-induced SBS was 0.7%.[12]Cole CR, Hansen NI, Higgins RD, et al; Eunice Kennedy Shriver NICHD Neonatal Research Network. Very low birth weight preterm infants with surgical short bowel syndrome: incidence, morbidity and mortality, and growth outcomes at 18 to 22 months. Pediatrics. 2008 Sep;122(3):e573-82.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848527
http://www.ncbi.nlm.nih.gov/pubmed/18762491?tool=bestpractice.com
A study from Italy found an incidence of 0.1% in over 30,000 live births, and 0.5% among very low-weight premature infants.[13]Salvia G, Guarino A, Terrin G, et al; Working Group on Neonatal Gastroenterology of the Italian Society of Pediatric Gastroenterology, Hepatology and Nutrition. Neonatal onset intestinal failure: an Italian multicenter study. J Pediatr. 2008 Nov;153(5):674-6.
http://www.ncbi.nlm.nih.gov/pubmed/18589446?tool=bestpractice.com