Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

Health Services Use during Transition from Pediatric to Adult Care for Inflammatory Bowel Disease: A Population-Based Study Using Health Administrative Data.

OBJECTIVES: To evaluate the impact of the transfer from pediatric to adult care on health services use for adolescents with inflammatory bowel disease (IBD). STUDY DESIGN: A population-based retrospective cohort study identified all children diagnosed with IBD from 1994 to 2008 and treated by pediatric gastroenterologists in Ontario, Canada, using health administrative data. Self-controlled case series analyses compared health service use in the 2 years before and 2 years after transfer with adult gastroenterologists, with a 6-month washout period at transfer. Outcomes evaluated included IBD-specific and IBD-related hospitalizations, emergency department use, outpatient visits, and laboratory use. The relative incidence (RI) in the post-transfer period was compared with pretransfer periods using Poisson regression analysis controlling for transfer starting age. Analyses were stratified by IBD type: Crohn's disease (CD) and ulcerative colitis (UC). RESULTS: There were 536 patients included in the study (388 CD, 148 UC). Emergency department use rate was higher after transfer for both CD (RI, 2.12; 95% CI, 1.53-2.93) and UC (RI, 2.34; 95% CI, 1.09-5.03), as were outpatient visits (CD: RI, 1.56; 95% CI, 1.42-1.72; UC: RI, 1.48; 95% CI, 1.24-1.76), and laboratory investigations (CD: RI, 1.43; 95% CI, 1.26-1.63; UC: 1.38; 95% CI, 1.13-1.68). There was no change in the hospitalization rate (CD: RI, 0.70; 95% CI, 0.42-1.18; UC: RI, 2.41; 95% CI, 0.62-9.40). CONCLUSIONS: Health services use in Canada increases after transfer from pediatric to adult care for outpatient visits, emergency department use, and laboratory tests, but not hospitalizations. This study has implications for the planning and budgeting of care for adolescents transitioning to adult care.

Clinical Presentation and Five-Year Therapeutic Management of Very Early-Onset Inflammatory Bowel Disease in a Large North American Cohort.

OBJECTIVE: To evaluate the presentation, therapeutic management, and long-term outcome of children with very early-onset (VEO) (≤ 5 years of age) inflammatory bowel disease (IBD). STUDY DESIGN: Data were obtained from an inception cohort of 1928 children with IBD enrolled in a prospective observational registry at multiple centers in North America. RESULTS: One hundred twelve children were ≤ 5 years of age with no child enrolled at <1 year of age. Of those, 42.9% had Crohn's disease (CD), 46.4% ulcerative colitis (UC), and 10.7% had IBD-unclassified. Among the children with CD, children 1-5 years of age had more isolated colonic disease (39.6%) compared with 6- to 10-year-olds (25.3%, P = .04), and 11- to 16-year-olds (22.3%, P < .01). The change from a presenting colon-only phenotype to ileocolonic began at 6-10 years. Children 1-5 years of age with CD had milder disease activity (45.8%) at diagnosis compared with the oldest group (28%, P = .01). Five years postdiagnosis, there was no difference in disease activity among the 3 groups. However, compared with the oldest group, a greater proportion of 1- to 5-year-olds with CD were receiving corticosteroids (P < .01) and methotrexate (P < .01), and a greater proportion of 1- to 5-year-olds with UC were receiving mesalamine (P < .0001) and thiopurine immunomodulators (P < .0002). CONCLUSIONS: Children with VEO-CD are more likely to have mild disease at diagnosis and present with a colonic phenotype with change to an ileocolonic phenotype noted at 6-10 years of age. Five years after diagnosis, children with VEO-CD and VEO-UC are more likely to have been administered corticosteroids and immunomodulators despite similar disease activity in all age groups. This may suggest development of a more aggressive disease phenotype over time.

Use of C-reactive protein in children with newly diagnosed inflammatory bowel disease.

C-reactive protein (CRP), a marker for inflammation, was evaluated with other routine blood tests in children with newly diagnosed inflammatory bowel disease. Evaluation of CRP level helped identify additional patients found to have inflammatory bowel disease at endoscopy, although a sizeable number of patients with mild ulcerative colitis had a normal CRP level.

Biliary atresia: the Canadian experience.

OBJECTIVE: To determine the outcomes of Canadian children with biliary atresia. STUDY DESIGN: Health records of infants born in Canada between January 1, 1985 and December 31, 1995 (ERA I) and between January 1, 1996 and December 31, 2002 (ERA II) who were diagnosed with biliary atresia at a university center were reviewed. RESULTS: 349 patients were identified. Median patient age at time of the Kasai operation was 55 days. Median age at last follow-up was 70 months. The 4-year patient survival rate was 81% (ERA I = 74%; ERA II = 82%; P = not significant [NS]). Kaplan-Meier survival curves for patients undergoing the Kasai operation at age < or = 30, 31 to 90, and > 90 days showed 49%, 36%, and 23%, respectively, were alive with their native liver at 4 years (P < .0001). This difference continued through 10 years. The 2- and 4-year post-Kasai operation native liver survival rates were 47% and 35% for ERA I and 46% and 39% for ERA II (P = NS). A total of 210 patients (60%) underwent liver transplantation; the 4-year transplantation survival rate was 82% (ERA I = 83%, ERA II = 82%; P = NS). CONCLUSIONS: This is the largest outcome series of North American children with biliary atresia at a time when liver transplantation was available. Results in each era were similar. Late referral remains problematic; policies to ensure timely diagnosis are required. Nevertheless, outcomes in Canada are comparable to those reported elsewhere.

Body mass index in children with newly diagnosed inflammatory bowel disease: observations from two multicenter North American inception cohorts.

OBJECTIVE: To conduct a systematic review of children with newly diagnosed inflammatory bowel disease (IBD) from 2 prospective inception cohorts to examine body mass index (BMI) status at presentation. STUDY DESIGN: Clinical, demographic, and BMI data were obtained from 783 patients with newly diagnosed IBD. National Health and Nutrition Examination Survey data for 2748 healthy children were used as a control. RESULTS: Most children with Crohn's disease and ulcerative colitis had a BMI in the normative range (5%-84%). Low BMI (<5%) was seen in 22% to 24% of children with Crohn's disease and 7% to 9% of children with ulcerative colitis. Ten percent of children with Crohn's disease and 20% to 30% of children with ulcerative colitis had a BMI at diagnosis consistent with overweight or risk for overweight. CONCLUSION: Children with IBD are affected by current population trends toward overweight. A significant subgroup of children with newly diagnosed IBD has a BMI categorized as overweight or at risk for overweight. Clinicians should be aware of possible IBD diagnosis in the presence increased BMI.