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Hvidovre Hospital - a part of Copenhagen University Hospital
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A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention

Research output: Contribution to journalJournal articlepeer-review

DOI

  1. Transition of Adolescents with Inflammatory Bowel Disease-Are the Pediatric Teams up to the Task?

    Research output: Contribution to journalJournal articlepeer-review

  2. Integration of eHealth Into Pediatric Inflammatory Bowel Disease Care is Safe: 3 Years of Follow-up of Daily Care

    Research output: Contribution to journalJournal articlepeer-review

  3. Mucosal microRNAs relate to age and severity of disease in ulcerative colitis

    Research output: Contribution to journalJournal articlepeer-review

  4. Extraintestinal Manifestations are Associated with Disease Severity in Pediatric Onset Inflammatory Bowel Disease

    Research output: Contribution to journalJournal articlepeer-review

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BACKGROUND: Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD).

OBJECTIVE: Our aim was to develop a personalized transition-transfer concept including relevant tools in an established eHealth (electronic health) program.

METHODS: Required transition skills and validated patient-reported outcome measures (PROMs) were identified via bibliographic search and clinical experience and were implemented into an existing eHealth program.

RESULTS: The following skills were identified: disease knowledge, social life, disease management, and making well-informed, health-related decisions. The PROMs included the following: self-efficacy (the IBD Self-Efficacy Scale-Adolescents), resilience (the 10-item Connor-Davidson Resilience Scale), response to stress (the Child Self-Report Responses to Stress-IBD), and self-management and health care transition skills (the Self-Management and Transition to Adulthood with Treatment questionnaire). Starting at age 14, the patient will be offered a 1-hour annual transition consultation with an IBD-specialized nurse. The consultation will be based on the results of the PROMs and will focus on the patient's difficulties. Patients will complete the PROMs on the eHealth program at home, allowing nurses and patients to prepare for the meeting. Symptom scores and medication will be filled out on the eHealth program to support disease self-management. The consultation will be a topic-centered dialogue with practical exercises. During routine outpatient visits with the provider, parents will be left out of half of the consultation when the patient is 16 years old; at 17 years old, the parents will not be present. At the transfer consultation, the pediatric provider, the adult gastroenterologist, the pediatric nurse, the patient, and the parents will be present to ensure a proper transfer.

CONCLUSIONS: We have conducted a personalized eHealth transition concept consisting of basic elements that measure, train, and monitor the patients' transition readiness. The concept can be implemented and adjusted to local conditions.

Original languageEnglish
Article numbere12258
JournalJMIR pediatrics and parenting
Volume2
Issue number1
ISSN2561-6722
DOIs
Publication statusPublished - 24 Apr 2019

    Research areas

  • Adolescents, Adult care, Inflammatory bowel disease, Transfer, Transition

ID: 57953431