JMIR Publications

ABSTRACT

Background:

Transfer of care from pediatric to an adult-focused provider is a crucial period for adolescents with Inflammatory Bowel Disease (IBD). However, programs containing specific tools to measure and improve patients’ transition skills are few.

Objective:

Our aim was to develop a transition-transfer model including relevant tools in an established eHealth-program.

Methods:

Required transition skills and validated Patient Reported Outcome Measures (PROMs) covering those skills were identified by reviewing the literature. PROMs were implemented into an existing eHealth-program.

Results:

Patients were expected to manage the following topics: disease-knowledge, social life, disease-management and making well-informed health related decisions. PROMs to represent those topics included: Self-efficacy, Connor-Davidson Resilience Scale-10, Response to Stress and The Self-Management and Transition to Adulthood with Treatment. Starting at age 14, the patient has a one-hour annual transition-consultation with an IBD-specialized nurse. The consultation is based on results of the PROMs and focuses on the patient´s difficulties. The consultation is a topic-centered dialogue with practical exercises. Patients complete the PROMs on the eHealth-program at home allowing nurses/patients prepare for the meeting. Symptom-score and medication is likewise filled out at the eHealth-program to support disease self-management. During routine outpatient visits, parents are left out for ½ of the consultation when patient is 16 years, and at 17 years the parents are not present. At the transfer consultation the pediatrician, the adult gastroenterologist, the pediatric nurse, the patient and parents are present to ensure a proper transfer.

Conclusions:

The transition program containing specific measures and tools is implemented in an established eHealth-program.