Children with early-onset inflammatory bowel disease (IBD): Analysis of a pediatric IBD consortium registry

Heyman, Melvin B.; Kirschner, Barbara S.; Gold, Benjamin D.; Ferry, George D.; Baldassano, Robert N.; Cohen, Stanley A.; Winter, Harland S.; Fain, P. L.; King, C.; Smith, Terry J.; El–Serag, Hashem B.

doi:10.1016/j.jpeds.2004.08.043

Cited by 509 publications

(405 citation statements)

References 41 publications

Supporting

Mentioning

337

Contrasting

Unclassified

Order By: Relevance

“…Parent-reported racial data indicated a predominance of white subjects (86%), with 10% African American, 1% Asian American/Pacific Islander, and 2% of mixed, Native American, or undisclosed background. This demographic distribution reflects that of the larger cohort previously reported (18).…”

Section: Samplesupporting

confidence: 81%

See 1 more Smart Citation

Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

2009

Primary Health Care

View full text Add to dashboard Cite

Objective-To extend development of a pediatric inflammatory bowel disease (IBD) healthrelated quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.Patients and Methods-Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.Results-We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.Conclusions-This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators. KeywordsCrohn disease; Ulcerative colitis; Well-being; Disease activity; Functional status © 2008 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Address correspondence and reprint requests to James Perrin, MD, 50 Staniford Street, Suite 901, Boston, MA 02114 (jperrin@partners.org). The authors report no conflicts of interest. The goals of this study, involving a consortium of pediatric IBD centers, were to extend evaluation of the Impact Questionnaire in a larger population and through factor analysis. We expected that confirmatory factor analysis would support the original 6 domains proposed by the developers of the measure. In addition, we compared the IBD-specific QoL findings with those on a more generic HRQoL measure and with measures of severity of IBD, as further validation of the measure. We hypothesized that the IBD measure would correlate well with broader measures of HRQoL. Furthermore, we expected that children and adolescents with more severe or active disease would report lower QoL. Based on previous research, we also expected that subjects with CD would report worse HRQoL. NIH Public Access PATIENTS AND METHODSThis study sampled children diagnosed with UC or CD followed at 1 of 6 pediatric gastroenterolog...

show abstract

Section: Samplesupporting

confidence: 81%

“…We used 2 methods of sampling. First, these centers had enrolled approximately 1800 children with IBD in a previously described consortium database (18). Parents of these children had agreed to participate in research across the sites when entered into the database.…”

Section: Methodsmentioning

confidence: 99%

Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

2009

Primary Health Care

View full text Add to dashboard Cite

show abstract

“…This observation is also consistent with other datasets. Previously reported rates of pancolitis in patients with UC, from prospective childhood studies (80%-90%) 7,19,20 are far higher than those from prospective adult studies (24% pancolitis 21 or 33% extensive colitis 22 ). Our study not only provides further replication of these data, but also directly compares a childhood-onset and adult-onset cohort within the same population using the Montreal classification (82% of childhood-onset UC patients had extensive colitis at last follow-up compared with 47% of adult-onset UC).…”

Section: Discussionmentioning

confidence: 78%

“…This hypothesis has been supported to some extent by the limited available data suggesting that childhood-onset CD may be characterized by extensive intestinal involvement at presentation. [7][8][9] However, rigorous studies investigating the progression of intestinal involvement and behavior in childhood disease are not available to help explore this hypothesis further.…”

mentioning

confidence: 99%

Definition of Phenotypic Characteristics of Childhood-Onset Inflammatory Bowel Disease

et al. 2008

View full text Add to dashboard Cite

See Dubinsky MC et al on page 1105 in CGH;See editorial on page 1038. Background & Aims:Childhood-onset inflammatory bowel disease (IBD) might be etiologically different from adult-onset IBD. We analyzed disease phenotypes and progression of childhood-onset disease and compared them with characteristics of adult-onset disease in patients in Scotland. ; 43% vs 3%; P < .0001; OR, 23.36; 95% CI, 13.45-40.59) with less isolated ileal (L1; 2% vs 31%; P < .0001; OR, 0.06; 95% CI, 0.03-0.12) or colonic disease (L2; 15% vs 36%; P < .0001; OR, 0.31; 95% CI, 0.21-0.46). UC was extensive in 82% of the children at diagnosis, versus 48% of adults (P < .0001; OR, 5.08; 95% CI, 2.73-9.45); 46% of the children progressed to develop extensive colitis during followup. Forty-six percent of children with CD and 35% with UC required immunomodulatory therapy within 12 months of diagnosis. The median time to first surgery was longer in childhood-onset than adult-onset patients with CD (13.7 vs 7.8 years; P < .001); the reverse was true

show abstract

“…The variable age at diagnosis, that is proper to assess time-dependent consequences of CD, in several studies has been related to disease location, gender, and familial history (10,18,21) . In 1996, Polito et al (21) , analyzing a cohort of 552 consecutive patients, found that a lesser age at diagnosis was associated with higher rates of familial history of CD, small bowel onset, stricturing disease, and surgery; younger age at diagnosis was also correlated with genetic factors (12) .…”

Section: Discussionmentioning

confidence: 99%

The Montreal classification for Crohn's disease: clinical application to a Brazilian single-center cohort of 90 consecutive patients

Torres

Rodrigues

Junqueira

et al. 2010

Arq. Gastroenterol.

View full text Add to dashboard Cite

CONTEXT: Crohn's disease presents very heterogeneous features from a clinical point of view, and classifying Crohn's disease patients in homogeneous subgroups in the light of genetic, molecular and clinical aspects is challenging. The Montreal Classification for Crohn's disease was proposed in 2005 as an effort to characterize Crohn's disease patients according to recent clinical and research advances in the field of inflammatory bowel disease. Since its proposition, the Montreal Classification needs an ample validation and application among different populations around the world. To date, there are no known studies applying the Montreal Classification to a Brazilian cohort of Crohn's disease patients. OBJECTIVES: To apply the Montreal Classification to a Brazilian cohort of Crohn's disease patients at a referral center for inflammatory bowel disease in Northwestern São Paulo State, Brazil. METHODS: We selected 90 consecutive well-characterized Crohn's disease patients assisted at Inflammatory Bowel Disease Outpatient Clinic between January 1992 and January 2007, with a minimum follow-up of 2 years; data concerning demographic characteristics, clinical onset of disease, age at diagnosis, time of disease, location and behavior of disease, presence of extraintestinal manifestations, familial occurrence, perianal involvement, treatment with biological drugs, and history of surgical treatment were evaluated. RESULTS: Male patients were predominant (54%), with a mean age at diagnosis of 33 ± 14 years old, and a median followup of 5.5 years. Most of the patients were diagnosed between 17 and 40 years old (59%), and had disease located in terminal ileum 46%), with a nonstricturing, nonpenetrating behavior (71%). Time of disease was correlated with necessity of biological treatment, disease behavior, and surgical treatment (P<0.05). CONCLUSIONS: These study findings are consistent with results from other studies conducted among different populations, although a further multicentric study with a larger number of patients would be necessary to validate the Montreal Classification among Brazilian population.

show abstract

Children with early-onset inflammatory bowel disease (IBD): Analysis of a pediatric IBD consortium registry

Cited by 509 publications

References 41 publications

Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

Definition of Phenotypic Characteristics of Childhood-Onset Inflammatory Bowel Disease

The Montreal classification for Crohn's disease: clinical application to a Brazilian single-center cohort of 90 consecutive patients

Contact Info

Product

Resources

About