A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention.
adolescents
adult care
inflammatory bowel disease
transfer
transition
Journal
JMIR pediatrics and parenting
ISSN: 2561-6722
Titre abrégé: JMIR Pediatr Parent
Pays: Canada
ID NLM: 101727244
Informations de publication
Date de publication:
24 Apr 2019
24 Apr 2019
Historique:
received:
19
09
2018
accepted:
24
03
2019
revised:
27
02
2019
entrez:
14
9
2019
pubmed:
14
9
2019
medline:
14
9
2019
Statut:
epublish
Résumé
Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD). Our aim was to develop a personalized transition-transfer concept including relevant tools in an established eHealth (electronic health) program. 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. 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. 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.
Sections du résumé
BACKGROUND
BACKGROUND
Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD).
OBJECTIVE
OBJECTIVE
Our aim was to develop a personalized transition-transfer concept including relevant tools in an established eHealth (electronic health) program.
METHODS
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
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
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.
Identifiants
pubmed: 31518331
pii: v2i1e12258
doi: 10.2196/12258
pmc: PMC6715343
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e12258Informations de copyright
©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.
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