Transition Readiness in Youth with Inflammatory Bowel Disease

Alice Foster; Justin M Chan; Eytan Wine; Wael El-Matary; Matthew W Carroll; Karen I Kroeker; Jennifer C deBruyn; Cynthia H Seow; Sally Lawrence; Kathy Evans; Cheryl Kluthe; Nastaran Sharifi; Christina Pears; Simone Nicol; Lily Olayinka; Nancy Fu; Hien Q Huynh; Brian Bressler; Charles N Bernstein; Kevan Jacobson

doi:10.1016/j.jpeds.2023.113403

Transition Readiness in Youth with Inflammatory Bowel Disease

J Pediatr. 2023 Jul:258:113403. doi: 10.1016/j.jpeds.2023.113403. Epub 2023 Apr 3.

Authors

Alice Foster¹, Justin M Chan¹, Eytan Wine², Wael El-Matary³, Matthew W Carroll², Karen I Kroeker⁴, Jennifer C deBruyn⁵, Cynthia H Seow⁶, Sally Lawrence¹, Kathy Evans¹, Cheryl Kluthe², Nastaran Sharifi⁶, Christina Pears⁷, Simone Nicol⁸, Lily Olayinka⁴, Nancy Fu⁹, Hien Q Huynh², Brian Bressler¹⁰, Charles N Bernstein¹¹, Kevan Jacobson¹²

Affiliations

¹ Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Faculty of Medicine, British Columbia Children's Hospital and British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada.
² Department of Pediatrics, Division of Gastroenterology, Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
³ Department of Pediatrics, Division of Gastroenterology, Winnipeg Children's Hospital, University of Manitoba, Winnipeg, Manitoba, Canada.
⁴ Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada.
⁵ Departments of Pediatrics and Community Health Sciences, Division of Gastroenterology, Alberta Children's Hospital, University of Calgary, Calgary, Alberta, Canada.
⁶ Division of Gastroenterology and Hepatology, Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.
⁷ IBD Center of BC, Vancouver, British Columbia, Canada.
⁸ Division of Pediatric Gastroenterology, Hepatology and Nutrition, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
⁹ Division of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
¹⁰ IBD Center of BC, Vancouver, British Columbia, Canada; Division of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
¹¹ University of Manitoba Inflammatory Bowel Disease Clinical and Research Center and Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
¹² Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Faculty of Medicine, British Columbia Children's Hospital and British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada; Department of Cellular and Physiological Sciences, University of British Columbia, Vancouver, British Columbia, Canada. Electronic address: kjacobson@cw.bc.ca.

PMID: 37019332
DOI: 10.1016/j.jpeds.2023.113403

Abstract

Objectives: To examine readiness of adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) to transition to adult care.

Study design: A cross-sectional multicenter study evaluating transition readiness in individuals with IBD 16-19 years old prospectively recruited from 8 Canadian IBD centers using the validated ON Taking Responsibility for Adolescent to Adult Care (ON TRAC) questionnaire. Secondary aims included (1) screening for depression and anxiety using the 8-item Personal Health Questionnaire Depression Scale and The Screen for Child Anxiety Related Emotional Disorders questionnaires, respectively; (2) evaluating the association between depression and anxiety with readiness and disease activity; and (3) subjectively evaluating AYA readiness based on physician and parent assessments.

Results: In total, 186 participants (139 adolescent, 47 young adult) were enrolled, mean age 17.4 years (SD, 0.87). ON TRAC scores determined that 26.6% of AYAs at pediatric and 40.4% at adult centers reached the threshold of readiness. On multivariable linear regression analysis age was positively (P = .001) and disease remission negatively (P = .03) associated with ON TRAC scores. No statistically significant differences were determined across centers. A significant percentage of AYAs reported moderate-to-severe depression (21.7%) and generalized anxiety (36%); however, neither were significantly associated with ON TRAC scores. Notably, physician and parental assessment of AYA readiness correlated poorly with ON TRAC scores (⍴ = 0.11, ⍴ = 0.24, respectively).

Conclusions: Assessment of transition readiness in AYAs with IBD highlighted that a large proportion do not have adequate knowledge or behavior skills needed for transition to adult care. This study infers that readiness assessment tools are essential during transition to identify deficits in knowledge and behavior skills that could be specifically targeted by the youth, caregivers, and multidisciplinary team.

Keywords: Crohn’s disease; anxiety; depression; inflammatory bowel disease; pediatrics; transition; ulcerative colitis.

Publication types

Multicenter Study

MeSH terms

Adolescent
Adult
Canada
Child
Cross-Sectional Studies
Humans
Inflammatory Bowel Diseases* / complications
Inflammatory Bowel Diseases* / diagnosis
Inflammatory Bowel Diseases* / therapy
Surveys and Questionnaires
Transition to Adult Care*
Young Adult