Ethical Considerations Within the ESPGHAN Community.

There are limited data on ethical issues related to the daily practice of members of the European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN). The role of the ESPGHAN Ethics Committee (EC) is to provide advice on such matters to its members. The present survey aimed to evaluate the current function, and reasons that ESPGHAN members consulted the ECs. One hundred and five participants from 24 different countries answered the questionnaire. Thirty-five point seven percent of the participants used the ESGHAN EC to ask about clinical practice problems and patient-related issues whereas 21.4% ask about human research questions. An important additional finding was that 66.3% of respondents consulted their hospital's EC when they had ethical concerns and 17.4% consulted with other colleagues with expertise. This is the first survey in the ESPGHAN and Europe that analyses ethical issues that are important to members of the National Societies for Pediatric Gastroenterology Hepatology and Nutrition.

Understanding and Responding to the Impact of COVID-19 on Paediatric Gastroenterology Training & Practice of Young ESPGHAN Members.

OBJECTIVES: Limited data exist about the impact of the coronavirus disease 2019 (COVID-19) pandemic on the training and clinical practice of young doctors. The aim of this study was to evaluate the impact on paediatric gastroenterologists in training posts during the first wave of the European COVID pandemic. METHODS: All Young members of European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) (YE) members received a multiple-choice questionnaire concerning the impact (if any) on their clinical practice, mental health, quality of care provided and fellowship/training experience. The survey was conducted between May 22, 2020 and June 10, 2020. RESULTS: Of the 144 responders (40% of YE members), 85% (n = 123) reported an impact of COVID-19. Ninety-six percent reported an impact on their clinical practice, including more virtual patient consultation (n = 91), underutilization of ambulatory care (n = 113) and reduced or lack of planned admissions (n = 75). Endoscopy restrictions to semi-urgent or emergency cases were reported in 82 and lack of medical equipment/drugs (n = 47) were also reported.Reported adverse mental health issues included poor concentration, increased stress levels, an impact on family life in 62% and a reduced quality of care in 45%; this was more often reported in doctors from Southern Europe (54%) than in those from other geographical areas.Seventy-seven percent reported an impact on the content of their fellowship, including lack of participation in national/international meetings, withdrawn research time and limited mentoring. CONCLUSIONS: The impact of the COVID-19 pandemic has been shown to affect the clinical practice, training and mental health of YE members. Adaptations of training programmes and targeted strategies to improve the clinical practice of young practitioners are needed and proposed in this manuscript.

The clinical presentation of coeliac disease in 1030 Swedish children: Changing features over the past four decades.

BACKGROUND: The features of paediatric coeliac disease have changed in recent decades. We hypothesised that the age at diagnosis might continue to increase, whereas the severity of symptoms should decrease. METHODS: In the present study, filed data on 1030 paediatric patients diagnosed with coeliac disease between 1973 and 2013 were analysed. The information available covered 99.8% of small bowel biopsies and included information on sex, age and clinical symptoms. RESULTS: The age at diagnosis increased significantly, from a mean of 2.2 years during the first 10 years to 8.2 years in recent years. The proportion of children with severe symptoms declined from 92.8% to 78%, as did the proportion of biopsies characterised by severe pathology. In recent years, the monosymptomatic form of coeliac disease has been more common, and the number of patients detected at screening has increased. The frequency of patients with gastrointestinal symptoms, extra-intestinal symptoms, and failure to thrive and/or short stature at presentation decreased. CONCLUSIONS: The mean age of newly diagnosed patients has increased over the last 15 years. Currently, coeliac disease shows a less severe picture in terms of symptoms and intestinal pathology. Younger children suffer primarily from gastrointestinal symptoms and growth failure, and adolescents from extra-intestinal manifestations.

Unusually High Incidence of Paediatric Coeliac Disease in Sweden during the Period 1973 - 2013.

OBJECTIVE: The prevalence of coeliac disease in Sweden during the "epidemic period" (1984-1996) was one of the highest in the world. The aim of this study was to assess the coeliac disease incidence in our region over the 41-year period, and how diagnostic activity and diagnostic accuracy were affected by the introduction of antibody testing. We also looked into how patients with mild enteropathy were evaluated. METHODS: In the county of Östergötland in Sweden, 2790 paediatric patients were investigated for suspected coeliac disease between 1973 and 2013. Notes were scrutinised for data on sex, age, histopathological reports and final diagnosis. For comparative purposes this period was divided into three sub-periods (1973-1983, 1984-1996 and 1997-2013) named pre-epidemic, epidemic and post-epidemic. RESULTS: Coeliac disease diagnosis was received by 1,030 patients. The peak incidence rate, 301 cases/100,000 in 1994 for the age group 0-1.9 years is the highest figure ever reported. The other age groups, 2-4.9, 5-14.9, and 15-17.9 years, also had high incidence rates. After the 1984-1996 "epidemic period" the incidence decreased for the youngest group but continued to increase for the other groups. The cumulative incidence at 18 years-of-age for children born during the epidemic reached 14 cases/1000 births, the highest figure hitherto reported. Diagnostic activity differed significantly between the three sub-periods (p<0.001) increasing gradually from 1984 and reaching a peak value of 0.87 in 2012. Cases of mild enteropathy were more frequently regarded as non-coeliac disease cases, decreasing significantly in the "post-epidemic" period (p<0.001). CONCLUSIONS: The incidence rate and cumulative incidence of coeliac disease were possibly the highest ever reported. Changes in diagnostic activity and accuracy could not be attributed to the introduction of new antibody tests, possibly because of other changes e.g. variations in the symptoms at presentation and improved knowledge of the disease among parents and health professionals.

Urinary nitric oxide metabolites in children with celiac disease after long-term consumption of oats-containing gluten-free diet.

OBJECTIVE: Oats are accepted in the gluten-free diet (GFD) for children with celiac disease (CD). Some reports have indicated, however, that not all celiac patients tolerate oats. We have previously shown that some children still have high levels of urinary nitric oxide (NO) metabolites as markers of intestinal inflammation after 1 year on GFD with oats. In this study, we measured urinary NO metabolites in CD children who had been consuming oats-containing GFD for an extended, 2-6-year period, also taking into consideration ordinary consumption of nitrite/nitrate-rich foods close to the urine sampling. MATERIALS AND METHODS: Morning urinary nitrite/nitrate concentrations were measured in 188 pediatric CD patients. A questionnaire was used to elucidate factors possibly affecting the urinary levels, for example, dietary factors, asthma, or urinary tract infection. RESULTS: Oats were consumed by 89.4% of the patients for a median time of 3 years. The median nitrite/nitrate level was 980 µM. The majority (70.2%) who consumed oats had low levels of urinary nitrite/nitrate, that is, <1400 µM, while 29.8% demonstrated high levels, that is, >1400 µM. Nitrite/nitrate-rich foods did not significantly influence the urinary concentrations. CONCLUSION: The urinary levels of NO metabolites revealed two subpopulations, one with high and one with low levels. The high levels could be possibly due to poor adherence to the GFD, sensitivity to oats, or some unknown factor(s). Nitrate-rich foods, asthma, or urinary tract infection did not affect the result. The elevated levels of NO metabolites could indicate mucosal inflammation and pinpoint the need of careful follow-up of children on oats-containing GFD.

Swedish children with celiac disease comply well with a gluten-free diet, and most include oats without reporting any adverse effects: a long-term follow-up study.

The only known treatment for celiac disease is a gluten-free diet (GFD), which initially meant abstention from wheat, rye, barley, and oats. Recently, oats free from contamination with wheat have been accepted in the GFD. Yet, reports indicate that all celiac disease patients may not tolerate oats. We hypothesized that celiac children comply well with a GFD and that most have included oats in their diet. A food questionnaire was used to check our patients; 316 questionnaires were returned. Mean time on the GFD was 6.9 years, and 96.8% of the children reported that they were trying to keep a strict GFD. However, accidental transgressions occurred in 263 children (83.2%). In 2 of 3 cases, mistakes took place when the patients were not at home. Symptoms after incidental gluten intake were experienced by 162 (61.6%) patients, mostly (87.5%) from the gastrointestinal tract. Small amounts of gluten (<4 g) caused symptoms in 38% of the cases, and 68% reported symptoms during the first 3 hours after gluten consumption. Oats were included in the diet of 89.4% of the children for a mean of 3.4 years. Most (81.9%) ate purified oats, and 45.3% consumed oats less than once a week. Among those who did not consume oats, only 5.9% refrained because of symptoms. General compliance with the GFD was good. Only the duration of the GFD appeared to influence adherence to the diet. Most patients did not report adverse effects after long-term consumption of oats.