Patients with paediatric inflammatory bowel disease (IBD) constitute one of the largest cohorts requiring transition from paediatric to adult services. Standardised transition care improves short and ...long-term patient outcomes. This study aimed to detail the current state of transition services for IBD in the United Kingdom (UK).
We performed a nationwide study to ascertain current practice, facilities and resources for children and young people with IBD. Specialist paediatric IBD centres were invited to contribute data on: timing of transition/transfer of care; transition resources available including clinics, staff and patient information; planning for future improvement.
Twenty of 21 (95%) of invited centres responded. Over 90% of centres began the transition process below 16 years of age and all had completed transfer to adult care at 18 years of age. The proportion of patients in the transition process at individual centres varied from 10% to 50%.Joint clinics were held in every centre, with a mean of 12.9 clinics per year. Adult and paediatric gastroenterologists attended at all sites. Availability of additional team members was patchy across the UK, with dietetic, psychological and surgical attendance available in <50% centres. A structured transition tool was used in 75% of centres. Sexual health, contraception and pregnancy were discussed by <60% of teams.
This study provides real-world clinical data on UK-wide transition services. These data can be used to develop a national strategy to complement current transition guidelines, focused on standardising services whilst allowing for local implementation.
An Unusual Case of Pale Stools Wong, Theodoric; Bhavsar, Hemant S.
Journal of pediatric gastroenterology and nutrition,
2015-September, Letnik:
61, Številka:
3
Journal Article
BackgroundCOVID-19 caused unprecedented changes in the way outpatient health care services are delivered throughout the world. The need to reduce transmission meant many services changed from ...face-to-face consultations to remote consultations, utilizing video or telephone technology. In face-to-face consultation, there are many non-verbal cues that are lost in remote consultation. In the paediatric age group, this part of the consultation is an essential component of a complete consultation. The lack of face-to-face service has led to concerns that children are not attending paediatric remote consultations with parents.ObjectivesEvaluate the presence or involvement of paediatric patients in remote consultations.MethodsWe reviewed all clinic letters on the computer system used in Peterborough City Hospital, e-Track, for the months September to October 2020. We read the letters and confirmed any presence of the child during the consultation. Table 1 Illustrates inclusion and exclusion criteria.Abstract 1529 Table 1Inclusion and exclusion criteria Inclusion criteria · Clinics taken place in the paediatric Rainforest outpatient department at Peterborough City Hospital · Children aged from 6 to 16 years Exclusion criteria · Children younger than 5 years · All face-to-face clinics. · Physiotherapy, dietician and psychological clinics · Oncology medicine clinics ResultsA total of 690 letters were reviewed that met the inclusion criteria. 182 (26.37%) were video consultations and 508 (73.76%) were telephone consultations figure 1. The male: female ratio was almost equal to 1.09:1.Of the 690 consultations, in 278 (40.27%) children were present, in 37 (5.36%) the children were at school and in 375 (54.34%), the majority, it was not documented about the presence of the child or any discussion with them figure 2.In those consultations in which children were present, 123 (44.24%) were video consultations and 155 (55.75%) were telephone consultations figure 3.Of the 182 total video consultations, in123 (67.58%) consultations children were present. On the other hand, of the 508 telephone consultations, only 155 (30.5%) had children present during the consultation figure 4.ConclusionsRemote consultations are not without drawbacks. A specific setting is required for a good remote consultation. This can lead to diagnostic difficulty or ambiguity and one should be more vigilant for safeguarding issues. In telephone consultations, there is a lack of inspection or visual assessment. In our study, we found that in more than half of the consultations, there was no clear documentation about the presence of the child or about the involvement of the child during paediatric remote clinics. This is an important missing element of the consultation that may further compound the issues described.The use of remote consultations will need careful planning, audit and standardized guidance from societies and royal colleges depending on the type of paediatric service, age of the patient, clinical subspecialty and new vs. follow up clinics to ensure a safe service.
BackgroundCOVID-19 has impacted on healthcare provision. Anecdotally, investigations for children with inflammatory bowel disease (IBD) have been restricted, resulting in diagnosis with no ...histological confirmation and potential secondary morbidity. In this study, we detail practice across the UK to assess impact on services and document the impact of the pandemic.MethodsFor the month of April 2020, 20 tertiary paediatric IBD centres were invited to contribute data detailing: (1) diagnosis/management of suspected new patients with IBD; (2) facilities available; (3) ongoing management of IBD; and (4) direct impact of COVID-19 on patients with IBD.ResultsAll centres contributed. Two centres retained routine endoscopy, with three unable to perform even urgent IBD endoscopy. 122 patients were diagnosed with IBD, and 53.3% (n=65) were presumed diagnoses and had not undergone endoscopy with histological confirmation. The most common induction was exclusive enteral nutrition (44.6%). No patients with a presumed rather than confirmed diagnosis were started on anti-tumour necrosis factor (TNF) therapy.Most IBD follow-up appointments were able to occur using phone/webcam or face to face. No biologics/immunomodulators were stopped. All centres were able to continue IBD surgery if required, with 14 procedures occurring across seven centres.ConclusionsDiagnostic IBD practice has been hugely impacted by COVID-19, with >50% of new diagnoses not having endoscopy. To date, therapy and review of known paediatric patients with IBD has continued. Planning and resourcing for recovery is crucial to minimise continued secondary morbidity.
BackgroundTherapeutic options for paediatric inflammatory bowel disease (IBD) are limited, especially for younger children. Unlike in adults, vedolizumab and ustekinumab are not licensed for ...paediatric use in the UK. We aimed to understand the real-world access to, and use of, these therapies in the paediatric population.MethodsWe surveyed UK IBD centres to assess the incident use of vedolizumab and ustekinumab from 1 January 2021 to 31 December 2021. We collected information on funding, dose escalations and therapeutic drug monitoring.Results18 of 21 centres responded, covering an estimated 5260 patients. One hundred and thirteen were started on vedolizumab, prescription incidence 2.2%, median prescriptions per centre was 4 (range 1–20). Considering ustekinumab, 73 patients were commenced, prescription incidence 1.4%. Median prescription per centre was 3.5 (range 1–13). Prescription rates at each centre were not predicted by patient number cared for at that centre (p=0.2). Dose escalation was common in vedolizumab (66.7% centres) and ustekinumab (55.5%).Funding strategies varied substantially, and multiple funding sources were used; 12 of 18 centres (66.7%) reported funding through routine National Health Service (NHS) England/Scottish arrangements. There was local NHS trust funding in 8 of 18 centres (44.4%). Individual funding requests (IFRs) were used in 5 of 18 (27.8%), although IFRs are reserved for patients with unique additional characteristics. Four centres were unable to achieve funding in pre-pubescent children.ConclusionsThere is widespread use of vedolizumab and ustekinumab across the UK, although practice is highly variable. Access to therapy appeared to differ substantially. There is a growing disparity between international guidelines and real-world practice. Establishing early and effective therapy in all patients remains a priority.
BackgroundEosinophilic oesophagitis (EOE) is a chronic immune-mediated inflammatory disease of the oesophagus, characterised by symptoms of oesophageal dysfunction and eosinophilic infiltration at ...oesophageal biopsy. Despite a growing body of research surrounding EOE, our understanding of its natural history and optimal management remains limited. To shed more light on this, the clinical characteristics, diagnosis and management of patients diagnosed with EOE presenting to our tertiary Paediatric Gastroenterology unit were studied. MethodsCase notes and electronic records of children diagnosed with EOE were reviewed retrospectively from a two-year period (July 2018 to July 2020). Children were eligible for inclusion if they had 1) histological confirmation of the presence of >15 eosinophils per high power field in at least one oesophageal mucosal biopsy taken at endoscopy; and 2) been discussed in the Paediatric Gastroenterology MDT for clinical-pathological correlation. Children with concomitant inflammatory diseases were excluded. Data on presenting features, investigations, management and response to treatment were collated and analysed using Microsoft Excel (Version 16.43).ResultsA total of 28 children with a diagnosis of EOE fulfilled inclusion criteria for this study, 20 (71.4%) males with a mean (SD) age of 8.91 (4.22) years. A quarter of children were referred by general practitioners and the remainder by hospital paediatricians and surgeons. Symptoms of dyspepsia and dysphagia predominated among 64.3% and 46.4% of subjects respectively. For 55.6% of children an allergic condition was also present, most commonly food allergy (42.9%) (figure 1). Blood eosinophils were elevated in 78.6% of children (mean (SD) 0.64 (0.43)). Twenty-four (88.9%) children had been started on a proton-pump inhibitor (PPI) prior to initial endoscopy and 63.6% were PPI-responsive. Macroscopic features of EOE were evident in 65.4% of subjects. Upon diagnosis, 24 children (85.7%) were reviewed by a dietician and started on an elimination diet (75% empiric versus 25% testing-directed). At subsequent review, 83.3% had clinically improved although only 52.9% showed histological evidence of improvement at reassessment. Mean (SD) time between initial endoscopy and reassessment was 10.5 (8.39) months. A further 12 children (28.6%) went on to have at least one more endoscopy. Topical steroid treatment with fluticasone was reserved as a second line treatment and given to three children (10.7%). Limitations to this study include the retrospective design, limiting comparison of treatment approaches and evaluation of longer-term outcomes among children with EOE.Abstract P12 Figure 1Prevalence of different types of allergies among children with EOE diagnosed at Leicester Royal InfirmaryOther allergies = subjects with allergic rhinitis or eczema. Any allergy = subjects with at least one of either food allergy, asthma or other allergy.ConclusionIn a cohort of children with EOE diagnosed at Leicester Royal Infirmary, male sex predominated whilst symptoms of dyspepsia or dysphagia, a history of atopy and elevated blood eosinophils were highly prevalent. Over 80% of children showed a clinical improvement with PPI therapy and dietary measures alone, highlighting the benefit of robust dietetic support. However, clinical improvement did not always correlate with endoscopic improvement. Moreover, escalation to second-line steroid treatment was uncommon, in part due to local challenges procuring orodispersible budesonide, which is not licensed in children.
ABSTRACT
Objectives:
Patients with paediatric inflammatory bowel disease (IBD) constitute one of the largest cohorts requiring transition from paediatric to adult services. Standardised transition ...care improves short and long‐term patient outcomes. This study aimed to detail the current state of transition services for IBD in the United Kingdom (UK).
Methods:
We performed a nationwide study to ascertain current practice, facilities and resources for children and young people with IBD. Specialist paediatric IBD centres were invited to contribute data on: timing of transition/transfer of care; transition resources available including clinics, staff and patient information; planning for future improvement.
Results:
Twenty of 21 (95%) of invited centres responded. Over 90% of centres began the transition process below 16 years of age and all had completed transfer to adult care at 18 years of age. The proportion of patients in the transition process at individual centres varied from 10% to 50%.
Joint clinics were held in every centre, with a mean of 12.9 clinics per year. Adult and paediatric gastroenterologists attended at all sites. Availability of additional team members was patchy across the UK, with dietetic, psychological and surgical attendance available in <50% centres. A structured transition tool was used in 75% of centres. Sexual health, contraception and pregnancy were discussed by <60% of teams.
Conclusions:
This study provides real‐world clinical data on UK‐wide transition services. These data can be used to develop a national strategy to complement current transition guidelines, focused on standardising services whilst allowing for local implementation.
In contrast to adult-onset inflammatory bowel disease (IBD), where many genetic loci have been shown to be involved in complex disease etiology, early-onset IBD (eoIBD) and associated syndromes can ...sometimes present as monogenic conditions. As a result, the clinical phenotype and ideal disease management in these patients often differ from those in adult-onset IBD. However, due to high costs and the complexity of data analysis, high-throughput screening for genetic causes has not yet become a standard part of the diagnostic work-up of eoIBD patients.
We selected 28 genes of interest associated with monogenic IBD and performed targeted panel sequencing in 71 patients diagnosed with eoIBD or early-onset chronic diarrhea to detect causative variants. We compared these results to whole-exome sequencing (WES) data available for 25 of these patients.
Target coverage was significantly higher in the targeted gene panel approach compared with WES, whereas the cost of the panel was considerably lower (approximately 25% of WES). Disease-causing variants affecting protein function were identified in 5 patients (7%), located in genes of the IL10 signaling pathway (3), WAS (1), and DKC1 (1). The functional effects of 8 candidate variants in 5 additional patients (7%) are under further investigation. WES did not identify additional causative mutations in 25 patients.
Targeted gene panel sequencing is a fast and effective screening method for monogenic causes of eoIBD that should be routinely established in national referral centers.
Gastro-oesophageal reflux in infancy Bhavsar, Hemant; Cullen, Mick; Beattie, R. Mark
Paediatrics and child health,
09/2011, Letnik:
21, Številka:
9
Journal Article
Recenzirano
Abstract Gastro-oesophageal reflux is very common in infancy. In most cases it is benign. It is important to differentiate physiological reflux from gastro-oesophageal reflux disease, which is ...gastro-oesophageal reflux with significant morbidity. This review summarizes the approach to infants with symptoms and signs of reflux, differential diagnosis, investigations with their limitations and non-pharmacological, pharmacological and surgical treatment. Most infants with gastro-oesophageal reflux do not need further investigation or medical management providing the infant is thriving. Severe cases require a careful diagnostic work up and consideration of the differential diagnoses, treatment of associated conditions and aggressive medical management of the reflux. Involvement of the multidisciplinary team is essential and in reflux resistant to standard medical management surgical intervention needs to be considered. A trial of a hydrolyzed milk protein formula may be beneficial in such cases.
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