Quality Items Required for Running a Paediatric Inflammatory Bowel Disease Centre: An ECCO Paper

Turner, Dan; Carle, Adam C.; Steiner, Steven J.; Margolis, Peter A.; Colletti, Richard B.; Russell, Richard K.; Levine, Arie; Kolho, Kaija‐Leena; Ruemmele, Frank M

doi:10.1093/ecco-jcc/jjx036

Cited by 22 publications

(18 citation statements)

References 23 publications

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“…While more care is being provided by pediatric gastroenterologists in specialized centres, a 2015 summit of patients and health care providers, convened by Crohn’s and Colitis Canada, recommended that children with IBD be treated by multidisciplinary teams consisting of specialist physicians, nurses, dietitians, social workers and mental health care providers (47). Such a multidisciplinary team has also been endorsed by the European Crohn’s and Colitis Organization as the standard of care for children with IBD (48). Unfortunately, the degree to which allied health care providers and specialists are available to care for children with IBD in Canada varies greatly by centre (49).…”

Section: Health Services Utilization and Cost Of Carementioning

confidence: 99%

The Impact of Inflammatory Bowel Disease in Canada 2018: Children and Adolescents with IBD

Carroll

Kuenzig

Mack

et al. 2018

Journal of the Canadian Association of Gastroenterology

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Canada has among the highest rates of childhood-onset IBD in the world. Over 7000 children and youth under 18 years old are living with IBD in Canada, and 600 to 650 children under 16 years old are diagnosed annually. While the peak age of onset of IBD is highest in the second and third decades of life, over the past two decades incidence has risen most rapidly in children under 5 years old. The treatment of children with IBD presents important challenges including therapeutic choices, risk of adverse events to medications, psychosocial impact on the child and family, increased cost of health care and the implications of the transition from pediatric to adult care. Despite the unique circumstances faced by children and their families, there is a lack of research to help understand the causes of the rising incidence and the best therapies for children with IBD. Scientific evidence—and specifically clinical trials of pharmaceuticals—are too often extrapolated from adult research. Health care providers must strive to understand the unique impact of childhood-onset IBD on patients and families, while researchers must expand work to address the important needs of this growing patient population. Highlights In 2018, there are over 7000 children and youth under 18 years old living with IBD in Canada, and 600 to 650 young children (under 16 years) diagnosed every year. The number of children in Canada living with IBD is growing rapidly, increasing 50% in the first decade of the 21st century. Inflammatory bowel disease is still rare in children younger than 5 years of age, but it is occurring in such young children more often than in the past. Children with IBD are different from adults. For example, delayed growth, extent of disease and difficulties encountered during adolescence are all unique to the pediatric experience. We must consider the psychosocial well-being of both children and their families, given that caring for a child with IBD can affect the global functioning of families. Treatment approaches in children sometimes differ from those in adults. However, to date, all effective therapies in adults have also been effective in children. There is great need for clinical trials of new therapies in children so that they have equal access to emerging treatments and optimal pediatric dosing can be established. Key Summary Points Rates of new diagnoses in children under 16 years old were increasing most rapidly in Ontario (increased 5.8% per year) and Quebec (increased 2.8% per year). Nova Scotia has the highest rate of pediatric IBD, with lower rates in Quebec and Ontario. However, even Ontario and Quebec have higher rates of pediatric IBD than most countries in the world. Inflammatory bowel disease is caused by the interaction between genes, environmental risk factors, the microbiome and t...

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Section: Health Services Utilization and Cost Of Carementioning

confidence: 99%

The Impact of Inflammatory Bowel Disease in Canada 2018: Children and Adolescents with IBD

Carroll

Kuenzig

Mack

et al. 2018

Journal of the Canadian Association of Gastroenterology

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“…The US Food and Drug Administration and the European Medicines Agency recommend genotyping TPMT SNPs prior to thiopurine administration in order to optimize therapy, without affecting treatment efficacy [11]. Guidelines for thiopurine dose adjustment based on TPMT genotype/phenotype have been published by several cooperative groups, including the Clinical Pharmacogenetics Implementation Consortium [10,12], the Dutch Pharmacogenetic Working Group (https://www.knmp.nl/ downloads/pharmacogenetic-recommendations-november-2018.pdf), and others [13].…”

Section: Introductionmentioning

confidence: 99%

PACSIN2 rs2413739 influence on thiopurine pharmacokinetics: validation studies in pediatric patients

et al. 2019

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The aim of the study was to validate the impact of the single-nucleotide polymorphism rs2413739 (T > C) in the PACSIN2 gene on thiopurines pharmacological parameters and clinical response in an Italian cohort of pediatric patients with acute lymphoblastic leukemia (ALL) and inflammatory bowel disease (IBD). In ALL, PACSIN2 rs2413739 T allele was associated with a significant reduction of TPMT activity in erythrocytes (p = 0.0094, linear mixed-effect model, multivariate analysis considering TPMT genotype) and increased severe gastrointestinal toxicity during consolidation therapy (p = 0.049). A similar trend was present also for severe hematological toxicity during maintenance. In IBD, no significant effect of rs2413739 could be found on TPMT activity, however azathioprine effectiveness was reduced in patients carrying the T allele (linear mixed effect, p = 0.0058). In PBMC from healthy donors, a positive correlation between PACSIN2 and TPMT protein concentration could be detected (linear mixed effect, p = 0.045). These results support the role of PACSIN2 polymorphism on TPMT activity and mercaptopurine adverse effects in patients with ALL. Further evidence on PBMC and pediatric patients with IBD supports an association between PACSIN2 variants, TPMT activity, and thiopurines effects, even if more studies are needed since some of these effects may be tissue specific.

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“…Turner et al found that a center effect is caused by the varying availability of facilities, personnel, management, supportive services, etc. and that there is a trend for increased availability with increased patient volume at the centers 20 . However, univariate analysis did not show any significant difference between smaller and larger, more specialized centers.…”

Section: Discussionmentioning

confidence: 99%

Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE 2014–2018

Leiz

Knorr

Moon

et al. 2022

Sci Rep

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The incidence and prevalence of pediatric-onset inflammatory bowel disease (PIBD) are on the rise worldwide. Initial symptoms are often recognized with a delay, which reduces the quality of life and may lead to an increased rate of complications. The aim of this study was to determine the diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data from the German-Austrian patient registry CEDATA-GPGE for children and adolescents with PIBD were analyzed for the period January 2014 to December 2018. There were 456 children identified in the data, thereof 258 children (57%) with Crohn’s disease (CD) and 198 children (43%) with Ulcerative colitis (UC). The median age was 13.3 years (interquartile range (IQR) = 10.9−15.0), and 44% were females. The median diagnostic delay was 4.1 months (IQR = 2.1–7.0) in CD and 2.4 months (IQR = 1.2–5.1) in UC (p = 0.01). UC was associated with earlier diagnosis than CD (p < 0.001). Only a few factors influencing the diagnostic delay have been verified, e.g., abdominal pain at night and if video capsule endoscopy was performed. Diagnostic delay improved over the years in participating centers, but the level of awareness needs to be high even in common symptoms like abdominal pain.

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Quality Items Required for Running a Paediatric Inflammatory Bowel Disease Centre: An ECCO Paper

Abstract: In this P-ECCO study, we attempted to tabulate, for the first time in paediatrics, 60 quality items that paediatric IBD referral centres may wish to include.

Cited by 22 publications

References 23 publications

The Impact of Inflammatory Bowel Disease in Canada 2018: Children and Adolescents with IBD

The Impact of Inflammatory Bowel Disease in Canada 2018: Children and Adolescents with IBD

PACSIN2 rs2413739 influence on thiopurine pharmacokinetics: validation studies in pediatric patients

Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE 2014–2018

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