Jordyn H Feingold1, Halley Kaye-Kauderer2, Michelle Mendiolaza3, Marla C Dubinsky4, Laurie Keefer5, Ksenia Gorbenko6. 1. Department of Medical Education, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Jordyn.feingold@icahn.mssm.edu. 2. Department of Medical Education, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Halley.kaye-kauderer@icahn.mssm.edu. 3. The Susan and Leonard Feinstein Mount Sinai Inflammatory Bowel Disease Center, Department of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Michelle.mediolaza@mssm.edu. 4. The Susan and Leonard Feinstein Mount Sinai Inflammatory Bowel Disease Center, Department of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Marla.dubinsky@mssm.edu. 5. The Susan and Leonard Feinstein Mount Sinai Inflammatory Bowel Disease Center, Department of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Laurie.keefer@mssm.edu. 6. Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America. Electronic address: Ksenia.gorbenko@mssm.edu.
Abstract
OBJECTIVE: To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents. METHODS: This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14-23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software. RESULTS: Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children's resilience; parents over-estimated their children's IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support. CONCLUSION: Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers.
OBJECTIVE: To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents. METHODS: This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14-23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software. RESULTS: Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children's resilience; parents over-estimated their children's IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support. CONCLUSION: Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers.
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