Anne Margot Roskott¹, Gerard Dijkstra², Edmond Rings³, Mireille Serlie⁴, Geert Wanten⁵, Rutger Ploeg¹, Vincent Nieuwenhuijs¹

¹Department of Transplantation and Organ Donation, University Medical Center Groningen (UMCG), Groningen, Netherlands; ²Department of Gatroenterology and Hepatology, UMCG, Groningen, Netherlands; ³Department of Pediatrics, UMCG, Groningen, Netherlands; ⁴Department of Endocrinology and Metabolism, Amsterdam Medical Center, Amsterdam, Netherlands; ⁵Department of Gastroenterology and Hepatology, University Medical Center Nijmegen, Nijmegen, Netherlands

Rationale: Chronic administration of total parenteral nutrition (TPN) enables patients with irreversible intestinal failure (IF) to survive. Complications, however, occur frequently and cause substantial morbidity and mortality. Intestinal transplantation (ITx) has evolved into a clinically feasible alternative treatment. Caregiver expertise and timely referral are key factors determining the outcome after ITx. DRIFT is developed by the Dutch IF Foundation (represented by the Dutch Home TPN Centers and the ITx Center) to monitor individual patients nationwide to improve the quality of care and warrant timely referral for ITx. (Inter)national online registration contributes to the establishment of a database for research and quality control with the aim to establish (inter)national guidelines for IF and ITx.

Methods: DRIFT is a web-based, English-language database tracking IF-specific clinical patient data (pediatric and adult), including quality of life (QoL). DRIFT warrants directly available, complete, update patient information. The online forum for professionals aids the complex decision-making and timing for referral and transplantation. Evidence-based care protocols are available for standardization of care. The website allows patients to access disease-related information, peer-group contact and completion of IF-specific QoL questionnaires to screen general wellbeing.

Results: International experienced groups were consulted. After consensus on content and requirements, the software was developed. Patient-data safety was ensured according to ISO-27001 standards. Currently the Dutch IF and ITx population are entered. The IF-specific QoL questionnaire 'the burden measurer' is being validated internationally.

Conclusion: DRIFT is established to optimize IF management in the Netherlands and to promote universal care standards for TPN and ITx. The registration can be applied internationally to facilitate and improve the outcome of IF and ITx. A demo version of DRIFT is available upon request (v.b.nieuwenhuijs@chir.umcg.nl).