Exploring the Diagnostic Spectrum of Children with Raised Faecal Calprotectin Levels.

Faecal calprotectin (FC) is a marker of gut inflammation. The cause and relevance of raised FC in children outside the context of established inflammatory bowel disease (IBD) have had minimal attention. This study aimed to address this by carrying out a retrospective study on children with abnormal FC tests aged 4-17 years without established IBD in the South Island, New Zealand. Abnormal FC results were stratified: 51-249 µg/g, 250-499 µg/g, and 500+ µg/g, and participants were categorised into diagnostic groups. Data were collected on symptoms and diagnostic tests. Three-hundred and ten children had abnormal index FC results, with a mean age of 12.9 years, and a 55% proportion of females. The median FC was 125 µg/g; 71% had levels 51-249 µg/g and 21% had levels 500+ µg/g. Of those with FC 500+ µg/g, 89% either had infectious diarrhoea or were diagnosed with IBD at the time of, or subsequent to, the index FC. Alarm symptoms did not delineate between groups with FC 500+ µg/g. Abnormalities in platelet levels, abdominal ultrasound, and colonoscopy were more frequent for children diagnosed with IBD. Repeat FC test levels were significantly reduced except for those subsequently diagnosed with IBD. Abnormal FC levels for the majority were below the level indicative of mucosal inflammation. Repeat FC testing could play an important role in distinguishing between diagnoses.

Transitional care of adolescents with inflammatory bowel disease to adult services varies widely across Australia and New Zealand.

Background and Aim: Children and adolescents account for approximately 14% of inflammatory bowel disease (IBD) diagnoses. At an appropriate age and level of development adolescents with IBD have their care transferred from the pediatric to adult clinical team during a process termed "transition". The study aim was to survey pediatric gastroenterologists throughout Australasia to identify commonality in the transition process to contribute to standardized guideline development. Methods: A descriptive survey captured key variables: transition clinic format, process and infrastructure, transition assessments, and guidelines. The survey was distributed electronically to 59 Pediatric Gastroenterologists throughout Australasia in January 2023. Results: Seventeen (29%) clinicians completed the survey: Australia 13 (76%). New Zealand 4 (24%). Thirteen (76%) respondents had access to a dedicated IBD transition clinic. Adolescents attended transition clinics 1-7 times, and the main processes transferred were: prescription provision, biologic appointments, and adult team contacts. Transition was first discussed age 13-15 years (53%), or 16-18 years (47%), with the main discussion topics including: continuing adherence (88%), smoking (59%), alcohol use (59%), recreational drug use (59%). Transition readiness assessments were done infrequently (24%). The minority (24%) used formal guidelines to inform the transition process, but 15 (88%) considered the development of a standardized Australasian guideline as beneficial/extremely beneficial. Conclusions: This survey highlighted that transition care for adolescents with IBD is variable across Australasia. Australasian guideline development may optimize the transition process for adolescents with IBD and improve their longitudinal outcomes.

Profile of Helicobacter pylori infections among children in the South Island of New Zealand (2010-2021).

BACKGROUND: Helicobacter pylori is a gram-negative gut bacterium most often acquired during childhood. International guidelines state that children with suspected H. pylori infection should be referred to a gastroenterologist for investigation via gastroscopy and biopsy. Eradication therapy should be prescribed for children with peptic ulcer disease or following a treatment risk/benefit discussion for those with an incidental gastroscopy finding. Guidelines state that for children a "test-and-treat" approach is not warranted, contrasting recommendations for adults. The aim of this study was to profile pediatric H. pylori infections in the South Island of New Zealand (NZ) to determine diagnostic and management strategies, and adherence to international guidelines. MATERIALS AND METHODS: Retrospective data for positive H. pylori tests between 2010 and 2021 were retrieved from hospitals and regional testing laboratories throughout the South Island (NZ) for children ≤18 years. Outcome data were retrieved from tertiary care hospital records; sociodemographic, testing methods, eradication therapy, and symptoms. RESULTS: Two-hundred and forty children were identified: 105 (44%) male, mean age 13.2 years (SD 4.3). Participants of Pasifika, Asian, and Middle Eastern/Latin American/African heritage were overrepresented compared to the NZ census data. Overall, 138 (58%) children were diagnosed via stool antigen tests, 78 (32%) serum, and only 24 (10%) adhered to international guidelines in being confirmed via gastroscopy. Only 59 (25%) had a record of eradication therapy, and 39/59 (66%) were retested to determine eradication success, with 32 (82%) negative tests and seven (18%) remaining positive. Of the 181 (75%) that had eradication status unknown, 66 (28%) had a retest result available with 48 (73%) testing negative and 18 (27%) positive, suggesting a substantial proportion had received eradication therapy without adhering to international guidelines. CONCLUSIONS: International guidelines were not adhered to for most children in the study cohort. Implications of this include cost, unnecessary venipuncture, and unjustified antibiotic exposure.

Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory Bowel Disease.

BACKGROUND: Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies. AIM: This study describes and evaluates a consensus method developed to ensure consumer needs were met. METHODS: Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included. RESULTS: The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions. CONCLUSIONS: Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).

Descriptive Epidemiology of Pediatric Inflammatory Bowel Disease in Oceania: A Systematic Review and Meta-Analysis.

OBJECTIVES: Pediatric inflammatory bowel diseases (IBDs) are chronic, idiopathic illnesses of the digestive tract, which can impact adversely on children's quality of life and burden health systems. International studies have shown these diseases are increasing. The aim was to describe pediatric IBD epidemiology across Oceania by conducting a systematic review and meta-analysis of incidence and prevalence. METHODS: Medline, EMBASE and Web of Science databases were searched in October 2022 for studies reporting rates of IBD, Crohn disease (CD), or ulcerative colitis (UC) in children (≤19 years). Several data collection methodologies were included and pooled estimates of incidence and prevalence were calculated using a random effects model with I2 measures of heterogeneity. RESULTS: Nineteen articles provided 15 incidence and 7 prevalence studies. Fourteen studies were from Australia, 8 studies from New Zealand, and no studies were found from the Pacific Islands. Study dates ranged from 1950 to 2020 with 11 studies using population-based designs. Pooled estimates for annual incidence were IBD 4.1 (3.4-4.8, I2 = 98.7), CD 2.3 (1.9-2.7, I2 = 98.6), and UC 0.9 (0.6-1.1, I2 = 96.8) per 100,000 person-years. Prevalence rates were IBD 36.0 (23.5-48.5, I2 = 98.4), CD 23.2 (6.6-39.8, I2 = 97.8), and UC 7.6 (2.7-12.5, I2 = 99.6) per 100,000 persons. CONCLUSIONS: Pediatric IBD is prevalent in Oceania with high incidence rates, particularly for CD. Low rates of IBD were observed in indigenous Australian, Maori, and New Zealand Pacific children and there were no studies from the Pacific Islands highlighting this as an area in need of further research.

Systematic Review of Diagnostic Delay for Children With Inflammatory Bowel Disease.

OBJECTIVES: Pediatric inflammatory bowel disease (IBD) is a complex inflammatory condition of the gut. Diagnosing IBD involves distinct longitudinal periods from first symptoms to primary care assessment, tertiary care referral, and then endoscopic confirmation. The term diagnostic delay (DD) is used if these periods are prolonged. The aim of this review was to amalgamate DD data for children with IBD, and identify factors associated with prolonged DD. METHODS: Six health literature databases were searched (December 2020). Inclusion criteria for papers were children diagnosed with IBD before the age of 18 years, DD central tendency data, and to report a central tendency of their DD data, cohort >10 children. For analysis, all data were weighted by cohort sample size. RESULTS: Searches identified 236 papers, and 26 were included in the final analysis with a pooled cohort of 7030 children. The overall DD periods were IBD 4.5 months [Interquartile range (IQR) 3.6-8.7 months], Crohn disease (CD) 5 months (IQR 4-7.2 months), and ulcerative colitis/indeterminate colitis/IBD-unclassified (UC/IC/IBDU) 3 months (IQR 2.2-4.9 months). The difference between subtypes was significant ( P < 0.001), with shorter DD for UC/IC/IBDU than CD ( P < 0.001) and IBD ( P < 0.001). DD periods were longer for CD than IBD ( P < 0.001). DD decreased over time for IBD ( P < 0.001) and UC ( P < 0.001) but the trend suggested an increase for CD ( P 0.069). CONCLUSIONS: This data can be used to benchmark DD for children with IBD. Individual centers could determine whether improvements to awareness or infrastructure may reduce DD in order to minimize the risk of poor outcomes.

Gastroenterology services for patients with Cystic Fibrosis across Australia and New Zealand: a multi-stakeholder assessment of patients' and professionals' perspectives.

Introduction: Gastrointestinal (GI) symptoms are common in individuals with Cystic Fibrosis (CF). International research has highlighted that GI care for this group of patients is lacking. Gastroenterology services to CF clinics across Australasia are yet to be examined. This study aimed to describe the current service delivery model and identify areas for improvement that may lead to positive patient outcomes. Materials and methods: CF clinicians (dietitians, clinical nurse consultants, respiratory consultants), gastroenterologists (GE), and patients or their carers from Australia and New Zealand (NZ) were surveyed online to gather their opinions on CF gastroenterology services provided in their region. Data were analysed using descriptive statistics (frequencies and percentages). Likert scale questions were analysed by grouping responses 1-5 and 6-10, presented alongside the median and interquartile range (IQR). Mann-Whitney U and chi-square tests were used to look at differences between stakeholder groups. Results: One hundred and fifty-six health professionals and 172 patients or their carers completed the survey. Results showed that the current GI model of care is predominantly a publicly funded service delivered outside of CF clinic time. GE are largely not integrated into the CF team and report a lack of training opportunities. There is a higher level of dissatisfaction with the current service model in NZ than Australia. Discussion: No stakeholder group deemed the current CF gastroenterology service model as adequate, leaving opportunity for transformations in this field. Ideally this study will invigorate the need for promotion and integration of GI services that would ultimately benefit the whole CF community.

A Short Knowledge Assessment Tool Is Valid and Acceptable for Adults with Inflammatory Bowel Disease.

BACKGROUND: For people with inflammatory bowel disease, validated knowledge questionnaires are valuable to identify gaps in understanding and explore the impact on disease variables. AIMS: The aim of this study was to validate the short knowledge questionnaire Inflammatory Bowel Disease Knowledge Inventory Device 2, known as IBD-KID2, for use with adults with inflammatory bowel disease. METHODS: Concurrent validity of IBD-KID2 was assessed by comparing scores with those achieved on the Crohn's and Colitis Knowledge Score (CCKNOW). IBD-KID2 reliability was assessed with test-retest completion at two time points, generalizability assessed by comparing IBD-KID2 cohort scores at different recruitment centres, and acceptability assessed using participant survey. RESULTS: Seventy-five adults with inflammatory bowel disease completed the study. The mean percentage scores achieved on the IBD-KID2 and CCKNOW were 72.8% (SD 16.0) and 49.7% (SD 18.2), respectively. There was a significant correlation between IBD-KID2 and CCKNOW scores (R 0.573, P < 0.005), confirming concurrent validity. IBD-KID2 reliability was confirmed as no significant difference was seen between scores at test and retest (mean difference -0.2, P = 0.92). Generalizability was established as no significant score difference was seen between recruitment centres after controlling for population differences. The acceptability survey showed that 49 (69%) participants preferred IBD-KID2 to the CCKNOW, 60 (85%) found the IBD-KID2 easier to complete, and 38 (53%) considered the CCKNOW as most suitable for adults. CONCLUSIONS: IBD-KID2 is a valid, reliable, and generalizable tool for measuring knowledge in adults with inflammatory bowel disease with good acceptability. IBD-KID2 is easy and quick to complete, hence limiting respondent burden.

A Symptom Self-report Tool for Children With Inflammatory Bowel Disease (IBDnow).

OBJECTIVES: Clinical symptom evaluation for children with inflammatory bowel disease (IBD) is typically done using composite tools: the Pediatric Crohn's Disease Activity Index (PCDAI) and Pediatric Ulcerative Colitis Activity Index (PUCAI). Both rely on clinician interpretation of child or parent symptom recall. No universal self-report tool has yet been developed for children with IBD to assess and report their symptoms. The research objective was to develop a self-report tool that produced information congruent with that obtained by clinicians using the PUCAI or PCDAI. METHODS: A children's symptom self-report tool (IBDnow) was developed with picture and text Likert symptom scales. The clinician and child completed their reports during the same outpatient consultation. Agreement levels were calculated at the individual level (identical child and clinician answers), category level (symptom severity), and aggregate level (cohort scores). Internal consistency was measured with Cronbach alpha. RESULTS: One hundred children from Christchurch (New Zealand) (n = 65), and Sydney (Australia) (n = 35) completed the study (Crohn's Disease (CD):88, ulcerative colitis (UC):12), mean age 13.9 years (±3.6). Mean individual agreement was 0.76 (±0.19). Category severity had very good or good inter-rater reliability for 5 of the 7 symptom scales and overall severity agreement of 76%. Aggregate mean scores were significantly different between clinicians (14.9, ±18.8), and participants (21.6, ±19.4), (P <0.005, confidence interval -9.0, -4.4), but 60 pairs had scores within a 10% margin. Cronbach alpha was 0.74. CONCLUSIONS: This self-report tool had good proportionate agreement between raters, and good crude agreement for symptom categories. Assigning PUCAI or PCDAI scores caused inter-rater discrepancies to be misleadingly magnified. Pediatric gastroenterologists may consider utilizing IBDnow to elicit symptom self-reports from children with IBD to enable them to communicate meaningful information on their ongoing symptom burden. This would be a positive step in helping children feel included in clinical encounters and promoting self-management, at the same time producing valid, subjective symptom recall.

Fundoplication versus postoperative medication for gastro-oesophageal reflux in children with neurological impairment undergoing gastrostomy.

BACKGROUND: Children with neurological impairments frequently experience feeding difficulties, which can lead to malnutrition and growth failure. Gastrostomy feeding is now the preferred method of providing nutritional support to children with neurological impairments who are unable to feed adequately by mouth. Complications may arise as a result of gastrostomy placement, and the development or worsening of gastro-oesophageal reflux (GOR) has been widely reported. This has led to the frequent use of surgical antireflux treatment in the form of a fundoplication, or other antireflux procedures. Fundoplication is associated with a high recurrence rate, surgical failure, and significant morbidity and mortality.Since proton pump inhibitors (PPIs) were introduced in the 1990s, they have come to play a larger part in the medical management of GOR in children with neurological impairments. Uncontrolled studies suggest that PPIs may be a safe, appropriate treatment for GOR. Other agents currently used include milk thickeners, acid suppression drugs, acid buffering agents, gut motility stimulants and sodium alginate preparations.There are risks and benefits associated with both surgical and medical interventions and further comparison is necessary to determine the optimal treatment choice. OBJECTIVES: To compare the effectiveness of antireflux surgery and antireflux medications for children with neurological impairments and GOR who are undergoing placement of a gastrostomy feeding tube. SEARCH METHODS: We searched the following databases on 23 March 2012: the Cochrane Central Register of Controlled Trials (CENTRAL), Ovid MEDLINE, EMBASE, CINAHL, LILACS and ISI Web of Science. Previously, we searched the Child Health Library in June 2009. We also performed online searches of trial registries, medical journals, conference proceedings, dissertations and theses. We contacted specialists in the medical and industry setting for knowledge of completed or ongoing trials. SELECTION CRITERIA: We sought to include randomised controlled trials that recruited children up to the age of 18 years with neurological impairments and GOR who were undergoing gastrostomy tube insertion. DATA COLLECTION AND ANALYSIS: The review authors worked independently to select trials; none were identified. MAIN RESULTS: We identified no trials that satisfied the criteria for this review. AUTHORS' CONCLUSIONS: There remains considerable uncertainty regarding the optimal treatment when faced with the decision of fundoplication surgery versus antireflux medications for children with GOR and neurological impairment who are undergoing gastrostomy insertion. There is a need for robust scientific evidence in order to provide data on the comparable risks or benefits of the two interventions.