K. Carlsen(1), M. Hald(1), M. Dubinsky(2), L. Keefer(3), V. Wewer(1)

Affiliates

1) Department of Pediatrics, Hvidovre Hospital, University of Copenhagen, Hvidovre, Denmark; 2)Icahn School of Medicine at Mount Sinai Hospital, Division of Pediatric Gastroenterology and Hepatology,Susan and Leonard Feinstein IBD Center, New York, United States 3)Icahn School of Medicine at Mount Sinai Hospital, Division of Gastroenterology Susan and Leonard Feinstein IBD Center, New York, United States;

Abstract

Background:
Transfer of care is a crucial period for adolescents with IBD. However, programs with specific tools to define, measure and improve patients’ transition skills are few. Our aim was to develop a systematic transition program including relevant and concrete tools in an established eHealth-program (Carlsen 2017).

Method:
Needed transition skills and validated Patient Reported Outcome Measures (PROM) covering those skills were identified by reviewing the literature, as well as interviewing adult and pediatric gastroenterologists. PROMs were implemented into an existing eHealth-program.

Results:
Topics patients were expected to manage were: knowledge, social life, disease-management and taking health related well-founded decisions. PROMs selected to represent those topics included: Self-efficacy (Izaguirre 2014), Connor-Davidson Resilience Scale-10 (Campbell-Sills 2007), Response to Stress (Connor-Smith 2000) and The Self-Management and Transition to Adulthood with Treatment, STARx (Ferris 2015).

Starting at age 14, the patient has a one-hour annual transition-consultation with an IBD-specialized nurse. The consultation is based on the patient´s Self-efficacy, Resilience and Response to Stress, and focuses on the patient´s abilities and difficulties. The consultation is a topic centered dialogue with practical exercises. Patients complete the PROMs on the eHealth-program at home, allowing patients and nurses to be prepared. Symptom-score and medication (type/dose) is likewise filled out at the eHealth-program to support disease self-management

During the routine outpatient visits, parents are left out for ½ of the consultation when patients is 16 years and at 17 years the parents are not present. At the transfer consultation (18 years old) both the pediatric and adult gastroenterologist, the pediatric nurse, the patient and parents are present to ensure a proper transfer. STARx is used to evaluate the patient at transfer.

Conclusion:
The transition program containing specific measures and tools is implemented in an established eHealth platform. The program will be tested in the outpatient clinic.