Transition Readiness in Youth with Inflammatory Bowel Disease.

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.

Engaging Patients and Caregivers in Research for Pediatric Inflammatory Bowel Disease: Top 10 Research Priorities.

INTRODUCTION: Including individuals with lived experience in pediatric inflammatory bowel disease (IBD) is essential to establishing a research agenda that is mutually impactful to both those treating and those experiencing the disease. METHODS: Using the James Lind Alliance approach to research priority setting, a 10-member steering committee composed of current and former pediatric patients with IBD, caregivers, and clinicians was formed. A national survey, disseminated across Canada, elicited uncertainties which were divided into unanswered and answered research questions. Subsequently a research prioritization survey was disseminated where respondents ranked their top 20 research uncertainties. A final prioritization meeting was held to agree upon the top 10 uncertainties. RESULTS: From 1209 research questions submitted by 363 participants, the list was reduced to 105 indicative questions that were within scope and deemed unanswered in the literature. Via the national research prioritization survey, this list was further reduced. The top 10 uncertainties identified at the final research consensus meeting, with 21 participants from all stakeholder groups, included "What are the causes of IBD?," "Can IBD be prevented?," "What role does diet have in the management of pediatric IBD?." Other questions concerned flare ups, biomarkers, optimal patient education, long-term effects of medication and early-diagnosis, role of psychological support, and optimal approach to diagnosis. CONCLUSION: This research adds a unique perspective by deriving a list of pediatric IBD research uncertainties important by patients and caregivers and clinicians.

Qualitative Analysis of Pediatric Patient and Caregiver Perspectives After Recent Diagnosis With Inflammatory Bowel Disease.

PURPOSE: A diagnosis of a chronic illness is a life-altering experience for a child and his or her family. The purpose of this study was to elicit children and parent perspectives following a diagnosis of Inflammatory Bowel Disease (IBD). DESIGN & METHODS: A qualitative description design was employed. Eighteen patients were recruited from a Pediatric IBD Clinic in Western Canada. Interviews were used to gather perceptions, opinions, and attitudes from children and their parents. Transcriptions of the interviews were analyzed using a qualitative content analysis. RESULTS: Four themes were identified: perspective of diagnosis, roles in care and decision-making, sharing the diagnosis, and treating the disease. Children and parents expressed varied emotions in response to diagnosis. Families articulated the desire to become more active members in the decision-making process on treatment choices. While using conventional medical therapy was seen as an appropriate choice for short-term therapy, many parents hoped that more non-conventional and alternative therapies could be used in the future. CONCLUSION: Healthcare providers need to provide excellent education on the disease process, treatment options, and the use of CAM therapy in IBD, while at the same time supporting children and parent's voices in treatment decisions. PRACTICE IMPLICATIONS: Improvement strategies need to be implemented to allow families to feel that they have a voice when making decisions regarding treatment options. Families need to be educated and supported on the use of CAM therapies in IBD.

Intestinal and gastric permeability in children with eosinophilic esophagitis and reflux esophagitis.

OBJECTIVES: Eosinophilic esophagitis (EoE) is an allergic and immune-mediated entity that leads to a characteristic inflammation of esophageal mucosa. Patients complain of dysphagia and reflux-like symptoms. As many as 80% of patients with EoE may also have a history of atopy, and patients with asthma and eczema have previously been shown to have increased intestinal permeability. This study was designed to assess small intestinal and gastric permeability in patients with EoE and to see whether it differed from healthy individuals and patients with reflux esophagitis (RE). METHODS: Gastric and small intestinal permeability was measured using sugar probe tests containing lactulose, mannitol, and sucrose. Lactulose-to-mannitol (L/M) ratios in the patient's urine were a measure for intestinal permeability, and total sucrose was a measure for gastric permeability. RESULTS: We analyzed samples from 23 patients with EoE, 20 RE, 14 normal upper endoscopy with gastrointestinal symptoms, and 26 healthy controls. All of the 4 groups had L/M ratios less than the upper limit of normal (<0.025). There was no statistically significant difference in gastric permeability between the 4 groups (L/M P = 0.26, sucrose P = 0.46). CONCLUSIONS: Our data suggest that an alteration in gastric and intestinal permeability does not play a role in EoE or RE pathogenesis.

The Frequency of Clinic Visits Was Not Associated with Medication Adherence or Outcome in Children with Inflammatory Bowel Diseases.

Background: Medication nonadherence is a challenge in pediatric patients with inflammatory bowel diseases (IBD). Poor adherence can result in disease flare-ups, disease complicationstherapy escalation, and the need for corticosteroids. The aim was to determine if clinic visit frequency was associated with treatment adherence. Methods: A retrospective chart review of patients attending the Edmonton Pediatric IBD Clinic (EPIC) at the Stollery Children's Hospital from January 2012 to December 2013 was completed. Correlations were made between frequency of clinic visit, percentage of prescriptions filled, percentage of requisitioned blood work completed, rural or urban residence, and steroid-free remission status of patients for the 6 months after the chart review. Results: 127 patients were reviewed with 82 patients diagnosed with Crohn's disease (CD) and 46 with ulcerative colitis (UC) which included one IBD-Unclassified. Mean age at diagnosis is 9.17 years and median duration of follow-up is 3.2 years. Almost all patients on infliximab infusions received them "within window." Immunomodulator median adherence rate was 88%. 5-ASA adherence was 82%. A median of 67% of patients had blood work completed as requested. Clinic visit frequency was not associated with adherence to blood work or to medications. Duration of disease was the only independent factor found to be associated with a reduction in blood work and immunomodulator adherence ("OR 0.86 and 95% CI: 0.74-0.99" and "OR 0.82 and 95% CI: 0.71-0.97") per year, respectively. Patients who remained corticosteroid-free in the 6 months after the 2 years' adherence review had an overall median medication adherence rate of 86% compared to only 53% for those who relapsed and required corticosteroids (p = 0.01). Conclusion: Clinic visit frequency was not associated with patient adherence to medications or blood work. However, disease duration was found to be associated with medication adherence. Adherent patients were more likely to remain in steroid-free remission.

A Canadian Study toward Changing Local Practice in the Diagnosis of Pediatric Celiac Disease.

Background. The European Society for Pediatric Gastroenterology, Hepatology and Nutrition endorses serological diagnosis (SD) for pediatric celiac disease (CD). The objective of this study was to pilot SD and to prospectively evaluate gastrointestinal permeability and mucosal inflammation at diagnosis and after one year on the gluten-free diet (GFD). We hypothesized that SD would be associated with similar short term outcomes as ED. Method. Children, 3-17 years of age, referred for possible CD were eligible for SD given aTTG level ≥200 U/mL, confirmed by repeat aTTG and HLA haplotypes. Gastrointestinal permeability, assessed using sugar probes, and inflammation, assessed using fecal calprotectin (FC), at baseline and after one year on a GFD were compared to patients who had ED. Results. Enrolled SD (n = 40) and ED (n = 48) patients had similar demographics. ED and SD groups were not different in baseline lactulose: mannitol ratio (L : M) (0.049 versus 0.034; p = 0.07), fractional excretion of sucrose (%FES; 0.086 versus 0.092; p = 0.44), or fecal calprotectin (FC; 89.6 versus 51.4; p = 0.05). At follow-up, urine permeability improved and was similar between groups, L : M (0.022 versus 0.025; p = 0.55) and %FES (0.040 versus 0.047; p = 0.87) (p > 0.05). FC improved but remained higher in the SD group (37.1 versus 15.9; p = 0.04). Conclusion. Patients on the GFD showed improved intestinal permeability and mucosal inflammation regardless of diagnostic strategy. This prospective study supports that children diagnosed by SD have resolving mucosal disease early after commencing a GFD.

Toward enteral nutrition for the treatment of pediatric Crohn disease in Canada: a workshop to identify barriers and enablers.

The treatment armamentarium in pediatric Crohn disease (CD) is very similar to adult-onset CD with the notable exception of the use of exclusive enteral nutrition (EEN [the administration of a liquid formula diet while excluding normal diet]), which is used more frequently by pediatric gastroenterologists to induce remission. In pediatric CD, EEN is now recommended by the pediatric committee of the European Crohn's and Colitis Organisation and the European Society for Paediatric Gastroenterology Hepatology and Nutrition as a first-choice agent to induce remission, with remission rates in pediatric studies consistently >75%. To chart and address enablers and barriers of use of EEN in Canada, a workshop was held in September 2014 in Toronto (Ontario), inviting pediatric gastroenterologists, nurses and dietitians from most Canadian pediatric IBD centres as well as international faculty from the United States and Europe with particular research and clinical expertise in the dietary management of pediatric CD. Workshop participants ranked the exclusivity of enteral nutrition; the health care resources; and cost implications as the top three barriers to its use. Conversely, key enablers mentioned included: standardization and sharing of protocols for use of enteral nutrition; ensuring sufficient dietetic resources; and reducing the cost of EEN to the family (including advocacy for reimbursement by provincial ministries of health and private insurance companies). Herein, the authors report on the discussions during this workshop and list strategies to enhance the use of EEN as a treatment option in the treatment of pediatric CD in Canada.

Patient and parent satisfaction with a dietitian- and nurse- led celiac disease clinic for children at the Stollery Children's Hospital, Edmonton, Alberta.

OBJECTIVE: To assess patient and parent satisfaction with a primarily nurse- and dietitian-led celiac disease clinic in a tertiary pediatric centre. METHODS: An online survey was sent to families and patients attending the Stollery Children's Hospital's Multidisciplinary Pediatric Celiac Clinic (Edmonton, Alberta) since 2007. The survey focused on clinic attendance, satisfaction with clinic structure, processes, and education and preference for alternatives to the current process. Respondents were asked to rank satisfaction or preference on a five-point Likert scale, with 1 being lowest and 5 being highest. RESULTS: Most satisfaction related to follow-up with serology (4.6) and with a dietitian (4.3). The most preferred changes included either meeting the entire multidisciplinary team after the biopsy (4.7), or meeting with only the dietitian and nurse after the biopsy (4.4). The preferred education resources were the Internet (4.3) and the dietitian (4.2). The mean overall satisfaction score of the Multidisciplinary Pediatric Celiac Clinic was 4.0. CONCLUSIONS: Results of the present survey suggested that patients and families value a multidisciplinary follow-up clinic for children with celiac disease. In particular, feedback based on repeat blood work and regular contact with a dietitian were highly valued. The present survey, outlining the most valued aspects of the clinic, may be useful for service delivery in other regions. In addition, it provides information on how to better support pediatric patients with celiac disease.