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Article ; Online: Measured resting energy expenditure by indirect calorimetry and energy intake in long-term growth hormone treated children with PWS.

Trueba-Timmermans, Demi J / Grootjen, Lionne N / Juriaans, Alicia F / Kerkhof, Gerthe F / Rings, Edmond H H M / Hokken-Koelega, Anita C S

Hormone research in paediatrics

2024

Abstract: Introduction: Severe obesity can develop in children with PWS when food intake is not controlled. Maintenance of body weight requires an energy balance, of which energy intake and energy expenditure are important components. Previous studies described a ...

Abstract	Introduction: Severe obesity can develop in children with PWS when food intake is not controlled. Maintenance of body weight requires an energy balance, of which energy intake and energy expenditure are important components. Previous studies described a decreased resting energy expenditure (REE) in growth hormone (GH)-untreated children with PWS. In short-term studies, no difference in REE was found between GH-treated and untreated children with PWS. However, there are limited data on REE in children with PWS who were GH-treated for a long period. Methods: This study describes measured REE (mREE), energy intake and body composition during long-term GH-treatment in children with PWS. Patients were treated with 1.0 mg GH/m2/day (~0.035mg/kg/day). REE was determined by indirect calorimetry; dietary energy intake was calculated using a 3-day dietary record. Body composition by Dual energy X-ray absorptiometry (DXA) scans. Results: We included 52 GH-treated children with PWS with mean (SD) age of 8.53 (4.35) years and median (IQR) GH-treatment duration of 7 (4-11) years. mREE increased with age, but was not associated with GH-treatment duration. A higher LBM was associated with higher mREE. Mean energy intake was significantly lower compared to daily energy requirements (DER) for age- and sex-matched healthy children (p<0.001), ranging from 23-36% less intake in children aged 3.5-12 years to 49% less intake in children aged 12-18 years. Fifty percent of children had a normal REE, 17.3 % a decreased REE and 32.7% an elevated REE, according to predicted REE based on measured REE in a large group of healthy children. Conclusion: In children with PWS, mREE increases with age. GH-treatment duration is not associated, whereas LBM is an important determinant of mREE. Children with PWS have a low to very low energy intake compared to DER for age- and sex-matched children, with a declining intake when becoming older.
Language	English
Publishing date	2024-02-16
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2537278-6
ISSN	1663-2826 ; 1663-2818
ISSN (online)	1663-2826
ISSN	1663-2818
DOI	10.1159/000536466
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Kinderartsen zien meer vraag naar diagnostiek ter geruststelling.

Ropers, Fabienne G / van Bodegom-Vos, Leti / Rietveld, Sophie / Bossuyt, Patrick M / Rings, Edmond H H M / Hillen, Marij A

Nederlands tijdschrift voor geneeskunde

2024 Volume 168

Abstract: Objective: Test decisions depend on the context in which health care is delivered. We interviewed paediatricians about perceived societal developments and their influence on diagnostic testing.: Design: Qualitative interview study.: Methods: Semi- ... ...

Title translation	Paediatricians report an increased demand for diagnostic tests for reassurance.
Abstract	Objective: Test decisions depend on the context in which health care is delivered. We interviewed paediatricians about perceived societal developments and their influence on diagnostic testing. Design: Qualitative interview study. Methods: Semi-structured in-depth interviews with 20 practicing Dutch paediatricians. Results: Paediatricians associated societal developments, such as decreased risk acceptance, with perceived pressure from parents to perform tests. They were motivated to restrict unnecessary tests to avoid harming the child. Conclusion: Besides motivation and effort of health care providers, appropriate testing requires system-level actions, such as counteracting a culture of blame and considering societal interests in guideline recommendations.
MeSH term(s)	Child ; Humans ; Pediatricians ; Motivation ; Practice Patterns, Physicians' ; Qualitative Research ; Diagnostic Tests, Routine
Language	Dutch
Publishing date	2024-02-13
Publishing country	Netherlands
Document type	English Abstract ; Journal Article
ZDB-ID	82073-8
ISSN	1876-8784 ; 0028-2162
ISSN (online)	1876-8784
ISSN	0028-2162
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Article ; Online: Diagnostic testing in children: A qualitative study of pediatricians' considerations.

Ropers, Fabienne G / Rietveld, Sophie / Rings, Edmond H H M / Bossuyt, Patrick M M / van Bodegom-Vos, Leti / Hillen, Marij A

Journal of evaluation in clinical practice

2023 Volume 29, Issue 8, Page(s) 1326–1337

Abstract: Aims and objectives: Studies in adult medicine have shown that physicians base testing decisions on the patient's clinical condition but also consider other factors, including local practice or patient expectations. In pediatrics, physicians and parents ...

Abstract	Aims and objectives: Studies in adult medicine have shown that physicians base testing decisions on the patient's clinical condition but also consider other factors, including local practice or patient expectations. In pediatrics, physicians and parents jointly decide on behalf of a (young) child. This might demand more explicit and more complex deliberations, with sometimes conflicting interests. We explored pediatricians' considerations in diagnostic test ordering and the factors that influence their deliberation. Method: We performed in-depth, semistructured interviews with a purposively selected heterogeneous sample of 20 Dutch pediatricians. We analyzed transcribed interviews inductively using a constant comparative approach, and clustered data across interviews to derive common themes. Results: Pediatricians perceived test-related burden in children higher compared with adults, and reported that avoiding an unjustified burden causes them to be more restrictive and deliberate in test ordering. They felt conflicted when parents desired testing or when guidelines recommended diagnostic tests pediatricians perceived as unnecessary. When parents demanded testing, they would explore parental concern, educate parents about harms and alternative explanations of symptoms, and advocate watchful waiting. Yet they reported sometimes performing tests to appease parents or to comply with guidelines, because of feared personal consequences in the case of adverse outcomes. Conclusion: We obtained an overview of the considerations that are weighed in pediatric test decisions. The comparatively strong focus on prevention of harm motivates pediatricians to critically appraise the added value of testing and drivers of low-value testing. Pediatricians' relatively restrictive approach to testing could provide an example for other disciplines. Improved guidelines and physician and patient education could help to withstand the perceived pressure to test.
MeSH term(s)	Adult ; Child ; Humans ; Parents ; Pediatricians ; Physicians ; Diagnostic Techniques and Procedures
Language	English
Publishing date	2023-05-24
Publishing country	England
Document type	Journal Article
ZDB-ID	1327355-3
ISSN	1365-2753 ; 1356-1294
ISSN (online)	1365-2753
ISSN	1356-1294
DOI	10.1111/jep.13867
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Article ; Online: Intestinal Regulatory T Cells as Specialized Tissue-Restricted Immune Cells in Intestinal Immune Homeostasis and Disease.

Jacobse, Justin / Li, Jing / Rings, Edmond H H M / Samsom, Janneke N / Goettel, Jeremy A

Frontiers in immunology

2021 Volume 12, Page(s) 716499

Abstract: ... ...

Abstract	FOXP3
MeSH term(s)	Animals ; Antigens/immunology ; Apoptosis/immunology ; Biomarkers ; Cell Communication ; Cellular Microenvironment/immunology ; Dendritic Cells/immunology ; Dendritic Cells/metabolism ; Disease Susceptibility ; Gastrointestinal Microbiome/immunology ; Genetic Predisposition to Disease ; Homeostasis ; Humans ; Immunity, Mucosal ; Immunomodulation ; Inflammatory Bowel Diseases/etiology ; Inflammatory Bowel Diseases/metabolism ; Inflammatory Bowel Diseases/pathology ; Intestinal Mucosa/immunology ; Intestinal Mucosa/metabolism ; Mucosal-Associated Invariant T Cells/immunology ; Mucosal-Associated Invariant T Cells/metabolism ; Receptors, Antigen, T-Cell/metabolism ; T-Lymphocytes, Regulatory/immunology ; T-Lymphocytes, Regulatory/metabolism ; Tretinoin/metabolism
Chemical Substances	Antigens ; Biomarkers ; Receptors, Antigen, T-Cell ; Tretinoin (5688UTC01R)
Language	English
Publishing date	2021-08-04
Publishing country	Switzerland
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	2606827-8
ISSN	1664-3224 ; 1664-3224
ISSN (online)	1664-3224
ISSN	1664-3224
DOI	10.3389/fimmu.2021.716499
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Article ; Online: Een overleden kind als orgaandonor: een groot offer gevraagd van de ouders.

Rings, Edmond H H M

Nederlands tijdschrift voor geneeskunde

2013 Volume 157, Issue 2, Page(s) A5786

Abstract: A shortage of organs is the key factor limiting transplantation in children. In the Netherlands, the Dutch Organ Donation Act allows voluntary registration. Citizens aged 12 years and older may register as organ donors of their own free will. This ... ...

Title translation	A deceased child as organ donor: a major sacrifice asked of the parents.
Abstract	A shortage of organs is the key factor limiting transplantation in children. In the Netherlands, the Dutch Organ Donation Act allows voluntary registration. Citizens aged 12 years and older may register as organ donors of their own free will. This results in a 40 percent registration of all Dutch citizens, and may partly explain the overall shortage, which also affects parents and children with end-stage organ failure. Alternatives such as living-related donor programs have been established as well as recruitment of child donors. A recent study evaluates the procurement of organs and tissues in pediatric intensive care units. This commentary questions this practice in light of voluntary registration and the resulting shortage of donor organs in general.
MeSH term(s)	Age Factors ; Child ; Family ; Humans ; Netherlands ; Pediatrics ; Refusal to Participate/statistics & numerical data ; Registries ; Third-Party Consent ; Tissue Donors/ethics ; Tissue Donors/psychology ; Tissue Donors/statistics & numerical data ; Tissue Donors/supply & distribution ; Tissue and Organ Procurement/legislation & jurisprudence ; Tissue and Organ Procurement/statistics & numerical data
Language	Dutch
Publishing date	2013
Publishing country	Netherlands
Document type	English Abstract ; Journal Article
ZDB-ID	82073-8
ISSN	1876-8784 ; 0028-2162
ISSN (online)	1876-8784
ISSN	0028-2162
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Article: Pharmacological and Parenteral Nutrition-Based Interventions in Microvillus Inclusion Disease.

Leng, Changsen / Rings, Edmond H H M / de Wildt, Saskia N / van IJzendoorn, Sven C D

Journal of clinical medicine

2020 Volume 10, Issue 1

Abstract: Microvillus inclusion disease (MVID) is a rare inherited and invariably fatal enteropathy, characterized by severe intractable secretory diarrhea and nutrient malabsorption. No cure exists, and patients typically die during infancy because of treatment- ... ...

Abstract	Microvillus inclusion disease (MVID) is a rare inherited and invariably fatal enteropathy, characterized by severe intractable secretory diarrhea and nutrient malabsorption. No cure exists, and patients typically die during infancy because of treatment-related complications. The need for alternative treatment strategies is evident. Several pharmacological interventions with variable successes have been tried and reported for individual patients as part of their clinical care. Unfortunately, these interventions and their outcomes have remained hidden in case reports and have not been reviewed. Further, recent advances regarding MVID pathogenesis have shed new light on the outcomes of these pharmacological interventions and offer suggestions for future clinical research and trials. Hence, an inventory of reported pharmacological interventions in MVID, their rationales and outcomes, and a discussion of these in the light of current knowledge is opportune. Together with a discussion on MVID-specific pharmacokinetic, -dynamic, and -genetic concerns that pose unique challenges regarding pharmacological strategies, we envision that this paper will aid researchers and clinicians in their efforts to develop pharmacological interventions to combat this devastating disease.
Language	English
Publishing date	2020-12-23
Publishing country	Switzerland
Document type	Journal Article ; Review
ZDB-ID	2662592-1
ISSN	2077-0383
ISSN	2077-0383
DOI	10.3390/jcm10010022
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Cognitive function during 3 years of growth hormone in previously growth hormone-treated young adults with Prader-Willi syndrome.

Trueba-Timmermans, Demi J / Grootjen, Lionne N / Juriaans, Alicia F / Mahabier, Eva F / Kerkhof, Gerthe F / Rings, Edmond H H M / Hokken-Koelega, Anita C S

European journal of endocrinology

2023 Volume 189, Issue 1, Page(s) 132–139

Abstract: Context: Most patients with Prader-Willi syndrome (PWS) have mild to moderate cognitive impairment. Growth hormone (GH) treatment has positive short- and long-term effects on cognition in children with PWS. Few studies, however, have investigated the ... ...

Abstract	Context: Most patients with Prader-Willi syndrome (PWS) have mild to moderate cognitive impairment. Growth hormone (GH) treatment has positive short- and long-term effects on cognition in children with PWS. Few studies, however, have investigated the effects of GH on cognitive functioning in adults with PWS. Objective: To investigate the effects of 3 years of GH treatment on cognitive functioning and behavior in young adults with PWS who were treated with GH during childhood. Design: Open-label, prospective study. Setting: Dutch PWS Reference Center. Methods: Patients were treated with 0.33 mg GH/m²/day (∼0.012 mg/kg/day; 33% of childhood dose). Cognitive functioning was measured by Wechsler Adult Intelligence (WAIS) tests. Behavior was studied by a developmental behavior checklist-parents/caregivers (DBC-P). Results: Forty-six young adults with PWS with a median age of 19 (IQR 17-21) years were investigated. Estimated mean (95% CI) total, verbal, and performance IQ remained stable during 3 years of GH-treatment. Total IQ being 66 (63-69) at the start and 67 (64-71) after 3 years (P = .30); Verbal IQ being 65 (62-68) and 66 (62-70), respectively (P = .31) and performance IQ being 67 (63-70) and 67 (63-72) resp. (P = .42). Estimated mean Total DBC score did not significantly change during 3 years of GH-treatment, being 36.3 at start and 36.5 after 3 years (P = .94) (P50). Conclusions: Three years of GH-treatment in young adults with PWS with 33% of the pediatric dose, maintains total, verbal, and performance IQ. The emotional and behavioral disturbances remained stable and were similar compared to peers with other intellectual disabilities.
MeSH term(s)	Humans ; Child ; Young Adult ; Adolescent ; Adult ; Growth Hormone/therapeutic use ; Prader-Willi Syndrome/drug therapy ; Prader-Willi Syndrome/psychology ; Prospective Studies ; Human Growth Hormone ; Cognition
Chemical Substances	Growth Hormone (9002-72-6) ; Human Growth Hormone (12629-01-5)
Language	English
Publishing date	2023-07-13
Publishing country	England
Document type	Journal Article
ZDB-ID	1183856-5
ISSN	1479-683X ; 0804-4643
ISSN (online)	1479-683X
ISSN	0804-4643
DOI	10.1093/ejendo/lvad084
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Article ; Online: Children with Intestinal Failure are at Risk for Psychopathology and Trauma.

Vlug, Lotte E / Legerstee, Jeroen S / Tabbers, Merit M / Demirok, Aysenur / Verloop, Merel W / Bosman, Lotte / Rings, Edmond H H M / Wijnen, René M H / Spoel, Marjolein / de Koning, Barbara A E

Journal of pediatric gastroenterology and nutrition

2023 Volume 77, Issue 6, Page(s) e104–e113

Abstract: Objectives: The objective of this study is to assess the psychopathology and medical traumatic stress in children with intestinal failure (IF) and identify associated risk factors.: Methods: Two-center study, performed from September 2019 until April ...

Abstract	Objectives: The objective of this study is to assess the psychopathology and medical traumatic stress in children with intestinal failure (IF) and identify associated risk factors. Methods: Two-center study, performed from September 2019 until April 2022 (partly during COVID-19 pandemic), including children (1.5-17 years) with IF, dependent on parenteral nutrition (PN) or weaned off PN, treated by a multidisciplinary IF-team. Psychopathology in children was evaluated with a semi-structured interview assessing psychiatric classifications and validated questionnaires assessing emotional (internalizing) and behavioral (externalizing) problems. Medical traumatic stress was assessed with a validated questionnaire. Problem scores were compared with normative data. Associations between clinical characteristics and outcomes were analyzed with linear regression analyses. Results: Forty-one (of 111 eligible) children were included [median age 8.9 years (interquartile range, IQR 5.5-11.8), 54% female, 73% born preterm]. Median PN-duration was 17.3 months (IQR 6.9-54.0); 17 children (41%) were still PN-dependent. One third of the children met criteria for at least 1 psychiatric classification (compared with 14% in age-matched general population). Anxiety disorders and attention deficit hyperactivity disorder were most common. In school-aged children (n = 29, 6-17 years), significantly increased emotional problems were consistently reported by children ( P = 0.011), parents ( P < 0.001), and teachers ( P = 0.004). In preschool children (n = 12, 1.5-5 years), no significant differences with normative data were found. Subclinical or clinical emotional problems were reported in 19 children (46%). Medical traumatic stress was present in 14%, and 22% of children had received psychological help for trauma before. Lower gastrointestinal related quality of life was associated with more emotional problems, but not PN-duration. Conclusions: Children with IF, particularly school-aged children, are at risk for psychological problems which is reflected by the high rate of received psychotherapy and the high rate of emotional problems and psychiatric classifications.
MeSH term(s)	Infant, Newborn ; Child, Preschool ; Child ; Humans ; Female ; Male ; Child Behavior Disorders/epidemiology ; Quality of Life ; Intestinal Failure ; Pandemics ; Attention Deficit Disorder with Hyperactivity/complications
Language	English
Publishing date	2023-09-08
Publishing country	United States
Document type	Journal Article
ZDB-ID	603201-1
ISSN	1536-4801 ; 0277-2116
ISSN (online)	1536-4801
ISSN	0277-2116
DOI	10.1097/MPG.0000000000003939
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Article: Ghrelin Levels in Children With Intestinal Failure Receiving Long-Term Parenteral Nutrition.

Vlug, Lotte E / Delhanty, Patric J D / Neelis, Esther G / Huisman, Martin / Visser, Jenny A / Rings, Edmond H H M / Wijnen, René M H / Nagelkerke, Sjoerd C J / Tabbers, Merit M / Hulst, Jessie M / de Koning, Barbara A E

Frontiers in nutrition

2022 Volume 9, Page(s) 896328

Abstract: Background: Children with intestinal failure (IF) require parenteral nutrition (PN). Transition to oral and enteral nutrition (EN) can be difficult also due to abnormal gastrointestinal motility. The gut hormone ghrelin is increased in states of ... ...

Abstract	Background: Children with intestinal failure (IF) require parenteral nutrition (PN). Transition to oral and enteral nutrition (EN) can be difficult also due to abnormal gastrointestinal motility. The gut hormone ghrelin is increased in states of negative energy balance, functioning to preserve euglycemia, and also has appetite stimulating and prokinetic properties. We aimed to evaluate and compare ghrelin levels in children with IF, and to assess the relationship with PN-dependency. Methods: In this exploratory prospective multicenter study, plasma acylated (AG) and unacylated (UAG) ghrelin levels were measured in children with short bowel syndrome (SBS) and with functional IF (pseudo-obstruction or any enteropathy) and compared with healthy control subjects. Spearman's rho (r Results: Sixty-four samples from 36 IF-patients were analyzed. Median baseline AG and UAG levels were respectively 279.2 and 101.0 pg/mL in children with SBS ( Conclusion: Children with IF had raised AG levels which could be related to starvation of the gut. The positive correlation between AG and glucose infusion rate in SBS suggests an altered glucoregulatory function.
Language	English
Publishing date	2022-05-11
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2776676-7
ISSN	2296-861X
ISSN	2296-861X
DOI	10.3389/fnut.2022.896328
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Article ; Online: Cognitive Outcomes in Children With Conditions Affecting the Small Intestine: A Systematic Review and Meta-analysis.

Vlug, Lotte E / Verloop, Merel W / Dierckx, Bram / Bosman, Lotte / de Graaff, Jurgen C / Rings, Edmond H H M / Wijnen, René M H / de Koning, Barbara A E / Legerstee, Jeroen S

Journal of pediatric gastroenterology and nutrition

2022 Volume 74, Issue 3, Page(s) 368–376

Abstract: Objectives: The aim of the study was to assess cognitive outcomes in children with intestinal failure (IF) and children at high risk of IF with conditions affecting the small intestine requiring parenteral nutrition.: Methods: EMBASE, Cochrane, Web ... ...

Abstract	Objectives: The aim of the study was to assess cognitive outcomes in children with intestinal failure (IF) and children at high risk of IF with conditions affecting the small intestine requiring parenteral nutrition. Methods: EMBASE, Cochrane, Web of Science, Google Scholar, MEDLINE, and PsycINFO were searched from inception to October 2020. Studies were included constituting original data on developmental quotient (DQ), intelligence quotient (IQ) and/or severe developmental delay/disability (SDD) rates assessed with standardized tests. We used appropriate standardized tools to extract data and assess study quality. We performed random effects meta-analyses to estimate pooled means of DQ/IQ and pooled SDD rates (general population mean for DQ/IQ: 100, for percentage with SDD: 1.8%) for 4 groups: IF, surgical necrotizing enterocolitis (NEC), abdominal wall defects (AWD), and midgut malformations (MM). Associations of patient characteristics with DQ/IQ were evaluated with meta-regressions. Results: Thirty studies met the inclusion criteria. The pooled mean DQ/IQ for IF, NEC, AWD, and MM were 86.8, 83.3, 96.6, and 99.5, respectively. The pooled SDD rates for IF, NEC, AWD and MM were 28.6%, 32.8%, 8.5%, and 3.7%, respectively. Meta-regressions indicated that lower gestational age, longer hospital stay, and higher number of surgeries but not parenteral nutrition duration, were associated with lower DQ/IQ. Conclusions: Adverse developmental outcomes are common in children with IF and NEC, and to a much lesser extent in children with AWD and MM. It is important to monitor cognitive development in children with conditions affecting the small intestine and to explore avenues for prevention and remediation.
MeSH term(s)	Child ; Cognition ; Enterocolitis, Necrotizing/epidemiology ; Gestational Age ; Humans ; Infant, Newborn ; Intelligence Tests ; Intestine, Small
Language	English
Publishing date	2022-02-27
Publishing country	United States
Document type	Journal Article ; Meta-Analysis ; Systematic Review
ZDB-ID	603201-1
ISSN	1536-4801 ; 0277-2116
ISSN (online)	1536-4801
ISSN	0277-2116
DOI	10.1097/MPG.0000000000003368
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