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This position paper by the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) Special Interest Group on Coeliac Disease (SIG-CD) presents an update to the 2016 recommendations concerning early diet and the risk of coeliac disease (CD). This update adheres to the policy that mandates reviewing guidelines every 5 years, particularly when new data emerge. The 2024 statements and recommendations are essentially similar to the 2016 recommendations. Breastfeeding, whether any amount, exclusive, or of any duration, does not reduce the risk of developing CD. Introducing gluten into an infant's diet at any time between completed 4 months (≥17 weeks) and 12 months of age does not affect the cumulative incidence of CD, although earlier introduction may lead to earlier seroconversion and CD. In observational studies involving cohorts with a known risk for CD, consuming a high amount of gluten compared to a low amount during weaning and in the subsequent childhood years-specifically the first 2-3 years, and even up to 5 years in some studies-was associated with an increased risk for CD. However, the specific optimal amounts of gluten consumption remain undetermined due to insufficient evidence on safe thresholds, and the impact of restricting gluten in the diet of healthy children of unknown risk for CD is unknown. Thus, any recommendation on the gluten amount is currently unjustifiable for the general population and infants with known HLA risk types. There is no specific guidance on the type of gluten-containing foods to be introduced at weaning.
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Aleitamento Materno , Doença Celíaca , Glutens , Criança , Pré-Escolar , Humanos , Lactente , Doença Celíaca/etiologia , Doença Celíaca/dietoterapia , Dieta/efeitos adversos , Dieta/normas , Dieta Livre de Glúten , Glutens/efeitos adversos , Fatores de RiscoRESUMO
Critics of the ESPGHAN guidelines on CD question the acceptance of the no-biopsy policy by patients and parents against the backdrop of a lifelong diagnosis. The aim of this study was to investigate the impact of the no-biopsy approach on dietary adherence and health-related quality of life (HRQOL). In this retrospective cohort study, patients ≤ 18 years diagnosed with CD between 2007 and 2017 were sent two questionnaires: a dietary interview and a CD-specific HRQOL questionnaire (CDDUX). Included patients were divided into group A (with biopsies <2012), B (with biopsies >2012) and C (without biopsies >2012). Fisher exact test and ANOVA were used to analyze the impact of the new diagnostic strategy. Forty-seven percent (82/173 patients) consented to participate in the study. Of them, 63% had a biopsy-confirmed diagnosis (40% before 2012 (group A), 23% after 2012 (group B)), and 37% were diagnosed without biopsies (group C). Dietary compliance was similar in all groups (p = 0.67). Group A scored significantly better on the subscale 'Having CD' compared to both groups diagnosed after 2012 (p = 0.003). Group A and group C seemed to score better on the total CDDUCX score when compared to group B (86 and 80% versus 61% respectively, p = 0.13). This was also observed within the subscale Diet; Group A and C scored significantly better than group B (62 and 72% versus 39% respectively, p = 0.09). CONCLUSIONS: Omitting duodenal biopsies in the diagnostic approach of our CD cohort had no adverse effect on dietary adherence and HRQOL. WHAT IS KNOWN: ⢠Since the publication of the ESPGHAN guideline of 2012, duodenal biopsies are no longer obligatory in the diagnostic approach of CD if IgA-antibodies for transglutaminase 2 are ≥10× ULN, endomysial antibodies are positive in a second blood sample and the patient/family agrees with the no-biopsy approach. ⢠Literature on the effect of the no-biopsy approach on dietary adherence and HRQOL is scarce. WHAT IS NEW: ⢠Omitting duodenal biopsies does not influence dietary adherence and quality of life. ⢠In our cohort, lower quality of life measured with the CDDUX subscale 'Having CD' is more likely to be related to shorter disease duration than to the diagnostic approach.
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BACKGROUND & AIMS: The potential effectiveness of gut-directed hypnotherapy (HT) is unknown for pediatric chronic nausea. This randomized controlled trial compared HT with standard medical treatment (SMT). METHODS: One hundred children (ages, 8-18 y) with chronic nausea and fulfilling functional nausea (FN) or functional dyspepsia (FD) criteria were allocated randomly (1:1) to HT or SMT, with a 3-month intervention period. Outcomes were assessed at baseline, at the halfway point, after treatment, and at the 6- and 12-month follow-up evaluation. Children scored nausea symptoms in a 7-day diary. The primary outcome was treatment success, defined as a reduction in nausea of 50% or more, at the 12-month follow-up evaluation. Secondary outcomes included adequate relief of nausea. RESULTS: After treatment and at the 6-month follow-up evaluation, there was a trend toward higher treatment success in the HT group compared with the SMT group (45% vs 26%, P = .052; and 57% vs 40%, P = .099, respectively). At 12 months, treatment success was similar in both groups (60% in the HT group and 55% in the SMT group; P = .667). In the FN group, significantly higher success rates were found for HT, but no differences were found in patients with FD. Adequate relief was significantly higher in the HT group than in the SMT group at the 6-month follow-up evaluation (children: 81% vs 55%, P = .014; parents: 79% vs 53%; P = .016), but not at the 12-month follow-up evaluation. CONCLUSIONS: HT and SMT were effective in reducing nausea symptoms in children with FN and FD. In children with FN, HT was more effective than SMT during and after the first 6 months of treatment. Therefore, HT and SMT, applied separately or in combination, should be offered to children with FN as a treatment option (Clinical trials registration number: NTR5814).
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Dispepsia , Hipnose , Adolescente , Criança , Dispepsia/terapia , Humanos , Náusea/terapia , Resultado do TratamentoRESUMO
OBJECTIVES: To gather the current evidence and to offer recommendations for follow-up and management. METHODS: The Special Interest Group on Celiac Diseases of the European Society of Paediatric Gastroenterology Hepatology and Nutrition formulated ten questions considered to be essential for follow-up care. A literature search (January 2010-March 2020) was performed in PubMed or Medline. Relevant publications were identified and potentially eligible studies were assessed. Statements and recommendations were developed and discussed by all coauthors. Recommendations were voted upon: joint agreement was set as at least 85%. RESULTS: Publications (n = 2775) were identified and 164 were included. Using evidence or expert opinion, 37 recommendations were formulated on: The need to perform follow-up, its frequency and what should be assessed, how to assess adherence to the gluten-free diet, when to expect catch-up growth, how to treat anemia, how to approach persistent high serum levels of antibodies against tissue-transglutaminase, the indication to perform biopsies, assessment of quality of life, management of children with unclear diagnosis for which a gluten-challenge is indicated, children with associated type 1 diabetes or IgA deficiency, cases of potential celiac disease, which professionals should perform follow-up, how to improve the communication to patients and their parents/caregivers and transition from pediatric to adult health care. CONCLUSIONS: We offer recommendations to improve follow-up of children and adolescents with celiac disease and highlight gaps that should be investigated to further improve management.
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Doença Celíaca , Adolescente , Doença Celíaca/diagnóstico , Doença Celíaca/terapia , Criança , Dieta Livre de Glúten , Seguimentos , Glutens , Humanos , Qualidade de VidaRESUMO
Coeliac disease is an immune-mediated condition characterized by chronic inflammation of the small bowel with villous atrophy driven by gluten ingestion in genetically predisposed individuals. It occurs frequently in both children and adults, affecting 1-4% of the population. The disease is associated with both gastrointestinal and extra-intestinal symptoms related to malabsorption and/or immune activation, and autoantibodies to tissue transglutaminase. Removal of gluten from the diet results in resolution of symptoms and enteropathy in the majority of patients. A good diagnostic work-up is important to avoid unnecessary restrictive diets in children. In this review on pediatric coeliac disease, we address epidemiology including predisposing environmental factors and possible preventive strategies, as well as the clinical presentation, diagnosis and follow-up. What is Known: â¢Primary prevention of coeliac disease is not possible; however, secondary prevention by targeting high-risk groups is recommended. â¢The diagnosis is safe without duodenal biopsies if specific conditions are met, also in asymptomatic children. What is New: â¢HLA-DQ typing is not routinely required for the diagnosis, whereas it can rule out coeliac disease if HLA-DQ2 and HLA-DQ8 are absent. â¢Follow-up could be improved by a more rational use of (laboratory) tests, increased intention to dietary compliance and quality of life.
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Doença Celíaca , Adulto , Doença Celíaca/diagnóstico , Doença Celíaca/epidemiologia , Doença Celíaca/etiologia , Criança , Glutens , Teste de Histocompatibilidade , Humanos , Intestino Delgado/patologia , Qualidade de VidaRESUMO
Adequate follow-up in celiac disease is important to improve dietary compliance and treat disease-related symptoms and possible complications. However, data on the follow-up of celiac children is scarce. We aimed to assess current pediatric celiac follow-up practices across Europe. Pediatricians and pediatric gastroenterologists from 35 countries in Europe, Israel, Turkey, and Russia completed an anonymous survey which comprised a 52-item questionnaire developed by the ESPGHAN Special Interest Group on Celiac Disease. A total of 911 physicians, the majority of whom exclusively worked in pediatric care (83%) and academic institutions (60%), completed the questionnaire. Mean age and mean experience with celiac care were 48.7 years (± 10.6) and 15.7 years (± 9.9), respectively. The vast majority (≥ 92%) always assessed anthropometry, dietary adherence, and tissue-transglutaminase IgA-antibodies at every visit, with the first visit being between 3 and 6 months after diagnosis. Other parameters (% always tested) were as follows: complete blood count (60%), iron status (48%), liver enzymes (42%), thyroid function (38%), and vitamin D (26%). Quality of life was never assessed by 35% of the responding physicians. Transition to adult care was mostly completed via a written transition report (37%) or no formal transition at all (27%).Conclusions: Follow-up of celiac children and adolescents in Europe may be improved, especially regarding a more rational use of (laboratory) tests, dietary and QoL assessment, and transition to adult care. Evidence-based advice from international scientific societies is needed. What is Known: ⢠Follow-up in celiac disease is important to treat disease-related symptoms, improve dietary compliance, and prevent possible complications. ⢠There is a lack of consensus about the appropriate follow-up. What is New: ⢠Almost all European physicians assess anthropometry, tissue-transglutaminase IgA-antibodies, and dietary adherence at every visit, but there are large variations in other follow-up aspects. ⢠Follow-up could be improved by a more rational use of (laboratory) tests, increased intention to dietary compliance, and quality of life together with transition programs to adult care.
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Doença Celíaca , Qualidade de Vida , Adolescente , Adulto , Doença Celíaca/diagnóstico , Doença Celíaca/terapia , Criança , Dieta , Seguimentos , Humanos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To study the optimal cut-off value for anti-tissue transglutaminase type 2 IgA antibodies (TG2A) in serum to select for diagnostic small bowel biopsies for celiac disease in children with type 1 diabetes mellitus. STUDY DESIGN: Children with type 1 diabetes mellitus with elevated TG2A titers and duodenal biopsies performed during the course of their diabetes treatment were included. Anti-endomysial antibodies were recorded if present. The optimal TG2A cut-off value, expressed as the ratio between obtained value and upper limit of normal (ULN), was determined using receiver operating characteristic curve analysis and compared with the cut-off value used in the European Society for Pediatric Gastroenterology, Hepatology and Nutrition guidelines in terms of sensitivity, specificity, positive and negative predictive value. RESULTS: We included 63 children. The optimal cut-off value for performing biopsies is demonstrated to be 11 times the ULN. Raising the cut-off value from 3 times the ULN to 11 times the ULN changed sensitivity from 96% to 87% and increased specificity from 36% to 73%, increased the positive predictive value from 88% to 94% and lowered negative predictive value from 67% to 53%. The percentage of normal histology was decreased from 12% to 6%. CONCLUSIONS: Increasing the TG2A cut-off value for performing duodenal biopsies in children with type 1 diabetes mellitus and suspected celiac disease leads to a substantial reduction of unnecessary biopsies. We advocate to adapt the European Society for Pediatric Gastroenterology, Hepatology and Nutrition 2012 guidelines for this group of children, including monitoring patients with TG2A levels of less than 11 times the ULN over time.
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Doença Celíaca/diagnóstico , Diabetes Mellitus Tipo 1/complicações , Proteínas de Ligação ao GTP/sangue , Transglutaminases/sangue , Adolescente , Anticorpos , Biópsia/efeitos adversos , Doença Celíaca/sangue , Doença Celíaca/etiologia , Criança , Pré-Escolar , Feminino , Humanos , Intestino Delgado/imunologia , Masculino , Proteína 2 Glutamina gama-Glutamiltransferase , Curva ROC , Estudos Retrospectivos , Sensibilidade e Especificidade , Procedimentos DesnecessáriosRESUMO
OBJECTIVES: The ESPGHAN 2012 coeliac disease (CD) diagnostic guidelines aimed to guide physicians in accurately diagnosing CD and permit omission of duodenal biopsies in selected cases. Here, an updated and expanded evidence-based guideline is presented. METHODS: Literature databases and other sources of information were searched for studies that could inform on 10 formulated questions on symptoms, serology, HLA genetics, and histopathology. Eligible articles were assessed using QUADAS2. GRADE provided a basis for statements and recommendations. RESULTS: Various symptoms are suggested for case finding, with limited contribution to diagnostic accuracy. If CD is suspected, measurement of total serum IgA and IgA-antibodies against transglutaminase 2 (TGA-IgA) is superior to other combinations. We recommend against deamidated gliadin peptide antibodies (DGP-IgG/IgA) for initial testing. Only if total IgA is low/undetectable, an IgG-based test is indicated. Patients with positive results should be referred to a paediatric gastroenterologist/specialist. If TGA-IgA is ≥10 times the upper limit of normal (10× ULN) and the family agrees, the no-biopsy diagnosis may be applied, provided endomysial antibodies (EMA-IgA) will test positive in a second blood sample. HLA DQ2-/DQ8 determination and symptoms are not obligatory criteria. In children with positive TGA-IgA <10× ULN at least 4 biopsies from the distal duodenum and at least 1 from the bulb should be taken. Discordant results between TGA-IgA and histopathology may require re-evaluation of biopsies. Patients with no/mild histological changes (Marsh 0/I) but confirmed autoimmunity (TGA-IgA/EMA-IgA+) should be followed closely. CONCLUSIONS: CD diagnosis can be accurately established with or without duodenal biopsies if given recommendations are followed.
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Doença Celíaca/diagnóstico , Gastroenterologia/normas , Pediatria/normas , Guias de Prática Clínica como Assunto , Autoanticorpos/sangue , Autoanticorpos/imunologia , Biópsia , Criança , Duodeno/patologia , Proteínas de Ligação ao GTP/imunologia , Gliadina/imunologia , Antígenos HLA-DQ/análise , Antígenos HLA-DQ/imunologia , Humanos , Imunoglobulina A/sangue , Imunoglobulina A/imunologia , Imunoglobulina G/imunologia , Proteína 2 Glutamina gama-Glutamiltransferase , Transglutaminases/imunologiaRESUMO
OBJECTIVE: To evaluate the (cost-)effectiveness of online consultations in follow-up of patients with celiac disease (CD). STUDY DESIGN: Multicenter randomized, controlled trial involving 304 patients aged ≤25 years with CD for ≥1 year, randomized to an online (n = 156) or outpatient consultation (n = 148). An online consultation included questionnaires for symptom and growth measurement. Antitransglutaminase-type-2 antibodies were determined using a point-of-care (POC) test. Controls had a traditional consultation with antitransglutaminase-type-2 antibodies testing in laboratories. Both groups completed questionnaires concerning CD-specific health-related quality of life (HRQOL), gluten-free diet adherence, and patient satisfaction. Six months later, participants repeated HRQOL and patient satisfaction questionnaires and the POC test. The primary outcome was anti-transglutaminase-type-2 antibodies after 6 months, and the secondary outcomes were health problems, dietary adherence, HRQOL, patient satisfaction, and costs. RESULTS: The performance of the POC test was inferior to laboratory testing (2/156 positive POC tests vs 13/148 positive laboratory tests; P = .003). Health problems were detected significantly more frequently using online consultation. The detection of growth problems and dietary transgressions was similar. HRQOL (from 1 [good] to 5 [poor]) improved after online consultation (from 3.25 to 3.16 [P = .013] vs controls from 3.10 to 3.23; P = .810). Patient satisfaction (from 1 [low] to 10 [high]) was 7.6 (online) vs 8.0 (controls; P = .001); 58% wished to continue online consultations. Mean costs per participant during the studied period were 202 less for the online group (P < .001). CONCLUSIONS: The primary outcome could not be tested because the POC test was unreliable. Nevertheless, our results indicate that online consultations for children and young adults with CD are cost saving, increase CD-specific HRQOL, and are satisfactory for the majority. TRIAL REGISTRATION: Trialregister.nl: NTR3688.
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Doença Celíaca/terapia , Telemedicina/métodos , Adolescente , Adulto , Doença Celíaca/diagnóstico , Doença Celíaca/economia , Criança , Pré-Escolar , Análise Custo-Benefício , Dieta Livre de Glúten , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , Países Baixos , Cooperação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Estudos Prospectivos , Qualidade de Vida , Encaminhamento e Consulta , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVE: To investigate whether implementation of a celiac disease (CD)-specific health-related quality of life (HRQOL) questionnaire would add value to CD follow-up visits; we compared patients' self-reported CD-specific HRQOL with the physician's report provided during a regular CD follow-up visit in children and young adults. METHODS: A cross-sectional study in the control group of a study on self-management in CD (CoelKids). Eligible patients had CD for ≥1 year and were 25 years or younger. They completed a CD-specific HRQOL questionnaire (CDDUX) after their regular follow-up visit. Their physicians were unaware of the present study's objectives or self-reported HRQOL. PRIMARY OUTCOME: agreement between physician-reported and self-reported HRQOL. SECONDARY OUTCOMES: patient variables predicting a discrepancy between reports, or a lower HRQOL. RESULTS: Physician-reported HRQOL was available in 70 of 78 enrolled patients. The self-reported and physician-reported HRQOL were concordant in 30 of 70 (Kâ=â0.093), 6 of them had a poor self-reported HRQOL. Reports were discrepant in 40 of 70; all 40 self-reported a poor HRQOL. Discrepancies occurred more frequently in patients with a disease duration <9 years (32/40 with discrepant reports were diagnosed <9 years ago vs 17/30 with no discrepancy, P<0.001) and in females (35/40 with discrepant reports were girls versus 16 of 30 with no discrepancy, Pâ=â0.001). Both factors were predictors of a poorer HRQOL. CONCLUSIONS: During regular CD follow-up visits, physicians did not report a poor HRQOL in 40 of 46 children and young adults with a poor self-reported HRQOL. This is consistent with previous studies examining other chronic diseases and supports the implementation of self-reported CD-specific HRQOL measurements in CD follow-up visits.
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Doença Celíaca , Indicadores Básicos de Saúde , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino , Análise Multivariada , Relações Médico-Paciente , Médicos , Autorrelato , Adulto JovemRESUMO
OBJECTIVES: Rotavirus vaccination has 87% to 100% effectiveness against severe rotavirus acute gastroenteritis (AGE) in healthy infants in high-income countries. Little is known whether infants with medical risk conditions (MRCs) are equally protected and if the vaccine is equally well tolerated. We conducted a quasi-experimental prospective multicenter before-after cohort study to assess the vaccine effectiveness (VE) and safety profile of the human rotavirus vaccine (HRV) among MRC infants that required prolonged or frequent postnatal care. METHODS: The Netherlands has no national rotavirus immunization program, but HRV was implemented in routine care for MRC infants in 13 Dutch hospitals. Participants in the before and after cohort, HRV unvaccinated and vaccinated, respectively, were followed for occurrence of (rotavirus) AGE. VE of at least 1 dose was estimated by using time-to-event analysis for severe rotavirus AGE. Vaccine-related serious adverse event (AEs) after HRV were retrieved systematically from medical charts. Solicited AEs after vaccinations were prospectively collected and compared between vaccination time points with or without HRV. RESULTS: In total, 1482 high-risk infants with MRC were enrolled, including 631 in the before and 851 in the after cohorts; 1302 infants were premature (88.3%), 447 were small for gestational age (30.2%), and 251 had at least 1 congenital disorder (17.0%). VE against severe rotavirus AGE was 30% (95% confidence interval [CI]: -36% to 65%). Overall, the observed number of rotavirus hospitalizations was low and not significantly different between the cohorts (2 and 2, respectively). The rate of vaccine-related serious AE was 0.24 per 100 vaccine doses. The adjusted risk ratio for any AE after HRV vaccination compared with other routine vaccinations was 1.09 (95% CI: 1.05 to 1.12) for concomitant administration and 0.91 (95% CI: 0.81 to 0.99) for single HRV administration. Gastrointestinal AEs were 10% more frequent after HRV. CONCLUSIONS: In contrast to previous findings among healthy term infants, in routine use, HRV offered limited protection to vulnerable medical risk infants. HRV is generally well tolerated in this group in single administration, but when coadministered with routine vaccines, it is associated with higher risk of (mostly gastrointestinal) AE. Our study highlights the importance of studying vaccine performance in subgroups of medically vulnerable infants.
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Gastroenterite/epidemiologia , Infecções por Rotavirus/epidemiologia , Vacinas contra Rotavirus/efeitos adversos , Eficácia de Vacinas , Anormalidades Congênitas/epidemiologia , Estudos Controlados Antes e Depois , Feminino , Gastroenterite/virologia , Hospitalização/estatística & dados numéricos , Humanos , Lactente , Recém-Nascido Prematuro , Recém-Nascido Pequeno para a Idade Gestacional , Masculino , Países Baixos/epidemiologia , Estudos Prospectivos , Vacinas contra Rotavirus/administração & dosagem , Cobertura VacinalRESUMO
AIM: To evaluate the yield of routine laboratory tests and Dual Energy X-ray Absorptiometry (DEXA) scans in coeliac disease. METHODS: A retrospective analysis of medical files of all followed-up patients with coeliac disease attending Rijnstate Hospital in 2016 was conducted with respect to blood tests of hemoglobin, vitamin B12, folate acid, iron status, calcium, vitamin D, glucose, thyroid function, DEXA-scans and related symptoms or signs of abnormalities. All patients had positive coeliac serology and/or biopsy-proven coeliac disease and attended regular visits after diagnosis. The chi-square test for trend was used for statistical analysis: a two-tailed probability of p < 0.05 was considered significant. RESULTS: We analyzed 250 patients with a median follow-up of 7.8 (1-22) years. At diagnosis, we found anemia in 24.4%, iron deficiency in 38%, folic acid deficiency in 22.6% and vitamin B12 deficiency in 15.9%. All deficiencies recovered within 1-2 years with or without supplements. Deficiencies or autoimmune diseases occurred in 50 patients (37 possibly coeliac-related) during follow-up. Twelve cases of coeliac-related deficiencies or autoimmune diseases occurred in patients with normal values at diagnosis of whom 10 were asymptomatic (incidence 10/1000 patient years). Osteoporosis and osteopenia were present in 23.3% and 35% at diagnosis. In most patients bone mineral density (BMD) improved or stabilized during follow up (p < 0.05), 8% deteriorated. CONCLUSIONS: The incidence of asymptomatic coeliac-related deficiencies or autoimmune diseases is low in patients with normal values at diagnosis. Therefore, routine laboratory screening is not necessary in this group: attending regular follow-up visits should be sufficient. DEXA scans are recommended.
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Absorciometria de Fóton , Doenças Autoimunes/sangue , Análise Química do Sangue , Doenças Ósseas Metabólicas/diagnóstico por imagem , Doença Celíaca/dietoterapia , Deficiências Nutricionais/sangue , Dieta Livre de Glúten , Osteoporose/diagnóstico por imagem , Doenças Autoimunes/epidemiologia , Biomarcadores/sangue , Doenças Ósseas Metabólicas/epidemiologia , Doença Celíaca/diagnóstico , Doença Celíaca/epidemiologia , Deficiências Nutricionais/epidemiologia , Humanos , Incidência , Países Baixos/epidemiologia , Osteoporose/epidemiologia , Valor Preditivo dos Testes , Prognóstico , Estudos Retrospectivos , Fatores de Risco , Fatores de TempoRESUMO
BACKGROUND AND AIMS: Conventional follow-up of teenagers with inflammatory bowel diseases [IBD] is done during scheduled outpatient visits regardless of how well the patient feels. We designed a telemonitoring strategy for early recognition of flares and compared its efficacy with conventional follow-up. METHODS: We used a multicentre randomized trial in patients aged 10-19 years with IBD in clinical remission at baseline. Participants assigned to telemonitoring received automated alerts to complete a symptom score and send a stool sample for measurement of calprotectin. This resulted in an individual prediction for flare with associated treatment advice and test interval. In conventional follow-up the health check interval was left to the physician's discretion. The primary endpoint was cumulative incidence of disease flares. Secondary endpoints were percentage of participants with a positive change in quality-of-life and cost-effectiveness of the intervention. RESULTS: We included 170 participants [84 telemonitoring; 86 conventional follow-up]. At 52 weeks the mean number of face-to-face visits was significantly lower in the telemonitoring group compared to conventional follow-up [3.6 vs 4.3, p < 0.001]. The incidence of flares [33 vs 34%, p = 0.93] and the proportion of participants reporting positive change in quality-of-life [54 vs 44%, p = 0.27] were similar. Mean annual cost-saving was 89 and increased to 360 in those compliant to the protocol. CONCLUSIONS: Telemonitoring is as safe as conventional follow-up, and reduces outpatient visits and societal costs. The positive impact on quality-of-life was similar in the two groups. This strategy is attractive for teenagers and families, and health professionals may be interested in using it to keep teenagers who are well out of hospital and ease pressure on overstretched outpatient services. TRIAL REGISTRATION: NTR3759 [Netherlands Trial Registry].
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Assistência Ambulatorial/métodos , Doenças Inflamatórias Intestinais/diagnóstico , Visita a Consultório Médico , Exacerbação dos Sintomas , Adolescente , Assistência Ambulatorial/economia , Criança , Análise Custo-Benefício , Diagnóstico Precoce , Fezes/química , Feminino , Humanos , Complexo Antígeno L1 Leucocitário/análise , Masculino , Cooperação do Paciente , Satisfação do Paciente , Qualidade de Vida , AutocuidadoRESUMO
Due to the association of coeliac disease and HLA-specificities DQ2 and DQ8, HLA-typing can be used for risk determination of the disease. This study was designed to evaluate the knowledge of parents from coeliac families regarding HLA-typing and the impact of HLA-typing on the perception of the health of their children. A structured questionnaire was sent to the Dutch, Spanish and German parents participating with their child in the European PreventCD study on disease prevention in high-risk families, addressing parents' understanding of and attitude towards HLA-typing, distress related to HLA-typing and perceived health and health-related quality of life of their children. Sixty-eight percent of parents of 515 children returned the questionnaires, with 85% of children being DQ2/DQ8 positive. The majority of all parents answered the questions on knowledge correctly. Forty-eight percent of parents of DQ2/DQ8-negative children thought their child could develop coeliac disease. More distress was reported by parents of DQ2/DQ8-positive children (P<0.001). All parents showed few regrets and would repeat HLA-typing in future children. Perceived health and health-related quality of life were similar. In conclusion, we can say that misinterpretation of DQ2/DQ8-negative results by parents is frequent. DQ2/DQ8-positive results do not affect perceived health and health-related quality of life of children but may cause temporary negative feelings among parents. Parents of coeliac families seem to support HLA-typing.