TY - JOUR

T1 - A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease

T2 - Design of Intervention

AU - Carlsen, Katrine

AU - Hald, Mette

AU - Dubinsky, Marla C

AU - Keefer, Laurie

AU - Wewer, Vibeke

N1 - ©Katrine Carlsen, Mette Hald, Marla C Dubinsky, Laurie Keefer, Vibeke Wewer. Originally published in JMIR Pediatrics and Parenting (http://pediatrics.jmir.org), 24.04.2019.

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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.

U2 - 10.2196/12258

DO - 10.2196/12258

M3 - Journal article

C2 - 31518331

VL - 2

JO - JMIR Pediatrics and Parenting

JF - JMIR Pediatrics and Parenting

SN - 2561-6722

IS - 1

M1 - e12258

ER -