SBS is the main cause leading to chronic intestinal failure. In France, Teduglutide, a GLP2 agonist is available since 2015. A multidisciplinary team (in particularly 5 specialized nurses, physicians, and a “partner” SBS patient) created an educational program for patients who start Teduglutide. The aim of our study is to describe the program and evaluate his feasibility.
Methods: In a reference centre with a cohort of 280 patients with CIF, 42 SBS patients started Teduglutide between last 2015 and December 2018. The multidisciplinary team have conceived a training program dedicated to teach a) to reconstitute and inject the drug b) clinical and biological parameters to monitor at home and c) to recognize the main signs of complications and/or efficacy requiring a call or venue to hospital for HPN or drug adjustment.
Results: The program included a) a written guide (“my patient book”) with information about SBS, drug monitoring, measurement sheets of quantifications, b) an injection training session (hand’on training and video film) d) a smartphone application (Android & iOS) developed together with the patient association "La vie par un Fil" called “Mon Suivi – La Vie par un fil” associated to a training video to monitoring (input - output balance, weight, vital parameters, etc.). Forty five patients had started Teduglutide. At the end of one training session, 28/45 patients were considered as totally autonomous in terms of a) injection of Teduglutide, b) knowledge of SBS, action of drug, clinical parameters requiring a monitoring at home and c) principal actions to do in specific situations such as dehydration, fluid overload, abdominal pain. Ten/45 patients required supplementary training sessions with a community nurse at home. Seven/45 patients were considered as partially autonomous, with the help of a nurse or family member still required. Ten/45 patients were trained to use the Smartphone app for the monitoring and used it regularly.
Conclusion: The arrival of new treatments in SBS is really challenging because rapid changes in digestive parameters may require faster adaptation of parenteral support than usual. A complete training program combining human resources, digital and written tools allows the increase of SBS patient autonomy. The next step should be an impact analyse of the impact of the program on mid and long term terms changes such as hospitalisation rate, global adhesion to SBS treatment and quality of life.