Shining a Light on Children Living with Short Bowel Syndrome Intestinal Failure (SBS-IF)
Eating and drinking is a basic need and pleasure. A part of everyday life: from birthday cakes and treats to sharing a dessert, popcorn in the cinema and meals with family and friends – imagine that simple joy being restricted or taken away? For children with short bowel syndrome with intestinal failure (SBS-IF), sadly this is often their reality.
SBS-IF is a rare and life-threatening disorder characterized by intestinal failure,1,2,3 which most commonly results from surgery to treat intestinal diseases, injuries, or birth defects.1,2,3 Children are left with a reduced gut function below the minimum necessary for the absorption of nutrients and fluids to sustain health, growth and survival.3,4,5,6 SBS-IF is associated with a range of debilitating symptoms which can be life threatening, including diarrhea, malnutrition and chronic dehydration.1,3
The impact of SBS-IF on both the child and their family can be devastating. Managing the treatment of these children can mean parents and caregivers might experience stress, frustration and difficulty sleeping.7,8 On the other hand, the children themselves can find it challenging to keep up with schoolwork, socialize with friends, or fully thrive physically and psychologically.8,9
Children with SBS-IF receive the nutrients and fluids their body needs through Parenteral Nutrition (PN). This intravenous treatment may be needed 5 -7 days a week and can take up to 10-12 hours per session, meaning it usually takes place overnight.8,9 PN is lifesaving,1,6,10,11 but long-term dependence is also associated with risks such as infections, sepsis, thrombosis, kidney dysfunction and liver failure.1,6,10,11
A delicate balance is required to minimize the impact of the disease and treatment complications, but as SBS-IF is a rare organ failure condition,3 first-hand experience and understanding amongst the healthcare community can be limited. As such, there is a need for increased awareness and education as well as improved access to specialist multidisciplinary teams to ensure patients have the best opportunities to thrive, and to provide support for their wider family unit.
Understanding these challenges, Takeda is working to improve awareness of SBS-IF within the medical, policy and patient advocacy communities. Providing opportunities to learn about the latest scientific research and best clinical practice is vital to improve care and the outlook for patients. This is why Takeda is committed to initiatives that support medical education and scientific exchange, such as attendance at pediatric congresses.
As part of our commitment, in June 2021 Takeda attended the 6th World Congress of Pediatric Gastroenterology, Hepatology and Nutrition (WCPGHAN), a virtual congress coordinated by the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN). The congress brought together a diverse group of multidisciplinary pediatric medical professionals to share their expertise and learn about optimal ways to manage the care of SBS-IF patients. We hope that these learnings will be key to advancing the care of children with SBS-IF. In times when face to face meetings have been restricted, virtual conferences and the facilitation of online scientific exchange has become even more critical.
Working with medical experts, Takeda aims to identify ways to enhance standards of care and quality of life for SBS-IF patients. We believe that it is only through open dialogue and exchange that we can achieve the most optimal care, so that children living with SBS-IF can enjoy their lives to the fullest – from popcorn at the cinema to sleepovers with friends, and much more. To find out more visit: https://int.shortbowelsupport.com/public/overview/children-sbs-if/
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