Short summary

The Department of Medical Gastroenterology, Odense University Hospital has for the past 11 years been responsible for the highly specialized function; patients with intestinal failure in need of long-term or permanent home parenteral nutrition (HPN) and difficult malabsorption. The most common reason to start HPN is short bowel syndrome of benign or malignant reason, where the remaining intestine is not capable of absorbing enough nutrients and fluids.

This research database will facilitate research in demography, treatment, complications and possible improvements of quality of life for the patients.

Rationale

The overall objective is to establish a research database for the epidemiological description of intestinal failure patients requiring HPN.

The aim is to promote the treatment and rehabilitation of patients with this relatively rare, but hard debilitating condition with high mortality. The purpose of the establishment of the database is also to increase knowledge in this area and potentially to unify the treatment of patients with intestinal failure in Denmark from more evidence-based principles.

The database will make it possible to study complications, hospitalizations, survival and causes of death in all intestinal failure patients treated in the department at OUH. There is a wish to share the data in the future and make the database nationwide. By improving the treatment, one target is to reduce HPN-related morbidity and mortality, as well as to reduce health economic costs.

Description of the cohort

All patients discharged with HPN from the Department of Medical Gastroenterology from 2005 to 2015, who has given written, informed consent to participate in the database.

Data and biological material

• Demographic data from patient files
• Microbiology and pathology
• Files on nutrition therapy; type and amount of parenteral nutrition, use of trace elements and vitamins.
• HPN treatment and education
• Comorbidity
• Complications; type, amount, treatment 
• Medication of short bowel associated symptoms
• Liver/ kidney failure
• CT scans; muscle mass measures, thrombotic events.

Collaborating researchers and departments

Department of Medical Gastroenterology, Odense University Hospital

• PhD-student Sine Roelsgaard Obling

• Professor and Consultant Jens Kjeldsen, PhD

• Nurse Lene Scheby

• Nurse Jeanette Bjerre Callesen