New RWE study indicates significant potential for improvement in treating adults with Short Bowel Syndrome (SBS-IF) 

An RWE study published in January 2024 in the Scandinavian Journal of Gastroenterology has revealed that the treatment of adults with Short Bowel Syndrome (SBS-IF) clearly has significant room for improvement. Patients require extensive amounts of healthcare services, and their mortality rate is elevated.  

According to the Real-World Evidence (RWE) study, the median life expectancy of patients suffering from Short Bowel Syndrome (SBS-IF) was 4.4 years from the onset of the syndrome. Over a span of five years, the healthcare expenses for an SBS-IF patient are estimated to average around 123,000 euros.  

“The prognosis for a patient with SBS-IF is poor. The outlook is even bleaker if the patient has comorbidities in addition to SBS-IF,” explains Dr. Sampsa Pikkarainen, a gastroenterology and internal medicine specialist at Helsinki University Hospital.  

This is the first Finnish Real-World Evidence (RWE) study that encompasses comprehensive follow-up data on patients’ treatment costs and mortality rates. The study utilized the Helsinki University Hospital Data Lake. HUS is the largest hospital district in Finland and comprises several hospitals across the Uusimaa region. 

Pharmaceutical company Takeda initiated the study in 2020. Medaffcon assisted in addressing how to find answers to Takeda’s research questions and conducted the analyses. Experts from the Helsinki University Hospital were involved at all stages, including manual review of the patient records to verify that the included patients had short bowel syndrome.  

A surprisingly large number of patients were found in the data lake of the Helsinki University Hospital 

The study’s dataset included all patients over 18 years of age who were treated at the hospital district of Helsinki University Hospital between 2010 and 2019. These patients were followed from the onset of their illness until the end of 2020 or until their death. They were compared to a control group of patients matched by birth year and gender who did not have Short Bowel Syndrome (SBS-IF).  

Over the ten-year period, 77 patients were identified from the data lake. This is a relatively large number of patients for a rare condition, especially considering that individual hospitals abroad tend to treat fewer patients. Studies from outside Finland have mainly been surveys, whereas this study covered the electronic medical records retrieved from the comprehensive data lake.  

Working with purpose in RWE research

According to Liisa Ukkola-Vuoti, PhD, a Senior Scientific Advisor in the RWE team at Medaffcon, the study has been able to provide evidence about the patient population at various stages.  

The study on patients with short bowel syndrome (SBS-IF) was the first project led by Liisa Ukkola-Vuoti at Medaffcon. In addition to adult patients, the study investigated pediatric patients. Since 2020, Ukkola-Vuoti has been the project manager in 16 RWE-studies, of which the teams have so far published nine scientific articles.  

“It can be said that my everyday work feels significant because it can improve patient care,” states Ukkola-Vuoti.  

The treatment of patients with Short Bowel Syndrome (SBS-IF) faces multiple challenges  

The study highlighted several issues that should be addressed in the treatment of Short Bowel Syndrome (SBS-IF).  

A major issue is the fragmentation of care. Finland has no specialised short bowel centers, unlike countries such as the UK, Denmark, and the USA.  

“Here, individual patients are followed up in various hospitals and by home care services. Not all patients are therefore under the surveillance of gastroenterologists,” describes Dr. Pikkarainen.

He asserts that patients need systematic monitoring. A need exists to develop multidisciplinary care, but the challenge lies in resources, especially since this concerns a rare disease.  

Limited dietitian roles are available within primary healthcare  

Anne Pohju, PhD, a chief dietitian from the Wellbeing services county of Central Finland emphasises that, beyond creating a network of expertise centers, it’s crucial to establish a robust home hospital network. This would enhance the quality of life by enabling chronically ill patients to live at home while receiving high-quality care.  

One of the challenges in treating adults with short bowel syndrome in Finland is the scarcity of dietitians. The allocation of resources especially in primary healthcare is inadequate due to the insufficient number of positions.  

Pohju serves as the chief dietitian in the Wellbeing Services County of Central Finland. She was part of the research group and working for the Helsinki University Hospital at the time of the study. 

Short Bowel Syndrome (SBS-IF) often stems from an underlying disease  

SBS-IF is the most common cause of intestinal failure. Patients lack a large portion of the small bowel, which disturbs nutrient absorption. The most common causes of SBS-IF are inflammatory bowel disease, mesenteric vascular disease, cancer, or traumatic injury.  

Adult patients with short bowel syndrome form a heterogeneous group due to varying underlying causes, remaining intestinal length, anatomy, and underlying disease.  

The primary treatment for SBS-IF is parenteral nutrition, which is nutrition provided intravenously, bypassing the gastrointestinal tract. SBS-IF patients rely on this form of nutrition until their intestine adjusts to the resection.  

Treatment of patients with SBS-IF has evolved. Patient care encompasses care at hospital and home, nutritional support, fluid and electrolyte management, and medications, requiring a complex multidisciplinary approach. Despite advancements in treatment, mortality remains high, and healthcare utilisation has increased compared to controls.  

“Ensuring a good quality of life should be at the forefront, guaranteeing that patients receive high-quality care in their final months of life. The care team would benefit from the inclusion of a palliative medicine expert,” says Pohju.  

Pohju emphasises that the overall situation should always be considered from a humane perspective: what makes sense for the patient and supports their wellbeing.

Read more:

Expenditure and survival of adult patients with intestinal failure due to short bowel syndrome: real-world evidence from Southern Finland. Ukkola-Vuoti L, Tuominen S, Pohju A, Kovac B, Lassenius MI, Merras-Salmio L, Pakarinen MP, Sallinen V, Pikkarainen S. Scand J Gastroenterology (2024).

Pediatric Short Bowel Syndrome: Real-World Evidence on Incidence and Hospital Resource Use From a Finnish Data Lake. Puttonen M, Tuominen S, Ukkola-Vuoti L, Lassenius MI, Virtanen H, Merras-Salmio L, Pakarinen M. Journal of Pediatric Gastroenterology and Nutrition (2023).

Find more RWE study summaries here.