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A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention

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...

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Autores principales: Carlsen, Katrine, Hald, Mette, Dubinsky, Marla C, Keefer, Laurie, Wewer, Vibeke
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715343/
https://www.ncbi.nlm.nih.gov/pubmed/31518331
http://dx.doi.org/10.2196/12258
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author Carlsen, Katrine
Hald, Mette
Dubinsky, Marla C
Keefer, Laurie
Wewer, Vibeke
author_facet Carlsen, Katrine
Hald, Mette
Dubinsky, Marla C
Keefer, Laurie
Wewer, Vibeke
author_sort Carlsen, Katrine
collection PubMed
description 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.
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spelling pubmed-67153432019-09-17 A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention Carlsen, Katrine Hald, Mette Dubinsky, Marla C Keefer, Laurie Wewer, Vibeke JMIR Pediatr Parent Original Paper 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. JMIR Publications 2019-04-24 /pmc/articles/PMC6715343/ /pubmed/31518331 http://dx.doi.org/10.2196/12258 Text en ©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. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on http://pediatrics.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Carlsen, Katrine
Hald, Mette
Dubinsky, Marla C
Keefer, Laurie
Wewer, Vibeke
A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title_full A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title_fullStr A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title_full_unstemmed A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title_short A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention
title_sort personalized ehealth transition concept for adolescents with inflammatory bowel disease: design of intervention
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715343/
https://www.ncbi.nlm.nih.gov/pubmed/31518331
http://dx.doi.org/10.2196/12258
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