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Dr. Hanneke IJsselstijn
Department of Pediatric Surgery and Intensive Care, Erasmus MC-Sophia Children's Hospital, 3015 CN Rotterdam, The Netherlands

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0 quality of life
0 Congenital diaphragmatic hernia
0 Risk stratification
0 Neurodevelopmental outcomes
0 Outcome studies

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Congenital diaphragmatic hernia
quality of life
Risk stratification
Neurodevelopmental outcomes

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Journal article
Published: 10 July 2021 in Children
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Increasing numbers of children and adults with chronic disease status highlight the need for a value-based healthcare system. Patient-reported outcome measures (PROMs) are essential to value-based healthcare, yet it remains unclear how they relate to clinical outcomes such as health and daily functioning. We aimed to assess the added value of self-reported PROMs for health status (HS) and quality of life (QoL) in the long-term follow-up of children with foregut anomalies. We evaluated data of PROMs for HS and/or QoL among eight-year-olds born with congenital diaphragmatic hernia (CDH), esophageal atresia (EA), or congenital lung malformations (CLM), collected within the infrastructure of a multidisciplinary, longitudinal follow-up program. Clinical outcomes were categorized into different outcome domains, and their relationships with self-reported HS and QoL were assessed through multivariable linear regression analyses. A total of 220 children completed HS and/or QoL self-reports. In children with CDH and EA, lower cognition was significantly associated with lower self-reported HS. Due to the low number of cases, multivariable linear regression analysis was not possible in children with CLM. HS, QoL, and clinical outcomes represent different aspects of a child’s wellbeing and should be measured simultaneously to facilitate a more holistic approach to clinical decision making.

ACS Style

Isabel Sreeram; Chantal Ten Kate; Joost van Rosmalen; Johannes Schnater; Saskia Gischler; René Wijnen; Hanneke Ijsselstijn; André Rietman. Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies. Children 2021, 8, 587 .

AMA Style

Isabel Sreeram, Chantal Ten Kate, Joost van Rosmalen, Johannes Schnater, Saskia Gischler, René Wijnen, Hanneke Ijsselstijn, André Rietman. Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies. Children. 2021; 8 (7):587.

Chicago/Turabian Style

Isabel Sreeram; Chantal Ten Kate; Joost van Rosmalen; Johannes Schnater; Saskia Gischler; René Wijnen; Hanneke Ijsselstijn; André Rietman. 2021. "Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies." Children 8, no. 7: 587.

Journal article
Published: 07 November 2020 in Journal of Pediatric Surgery
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Introduction We aimed to investigate QoL in EA patients in relation to comparison groups and to clinical factors including experienced traumatic stress. Material and Methods Adolescents with EA in Norway born between 1996 and 2002 were included. Clinical assessment and patient's characteristics were collected. Quality of life (PedsQL), traumatic stress (IES-13) and mental health (SDQ-20) were compared to groups of healthy controls, children with acute lymphoblastic leukemia (ALL) and kidney transplanted children (TX). Results 68 EA adolescents participated. Total scores for PedsQL were not different from the healthy group and ALL patients, but significantly better than the TX patients. The subscale for physical performance was significantly lower than in healthy adolescents, and nine (17%) patients had scores ≤70 indicating reduced health status. Five EA adolescents (12%) had mental health scores suggesting a psychiatric disorder, and six (9%) reported high traumatic stress scores with a significant correlation to days on ventilator in the neonatal period. The strongest predictors for quality of life among EA adolescents were self-reported mental health, posttraumatic stress and GERD symptoms. Conclusion Scores for Quality of life in the EA group are good except for subscale for physical performance. Symptoms of posttraumatic stress, mental strain and gastroesophageal reflux are predictors of reduced QoL.

ACS Style

A. Mikkelsen; B. Boye; T.H. Diseth; U. Malt; L. Mørkrid; H. Ijsselstijn; R. Emblem. Traumatic stress, mental health and quality of life in adolescents with esophageal atresia. Journal of Pediatric Surgery 2020, 1 .

AMA Style

A. Mikkelsen, B. Boye, T.H. Diseth, U. Malt, L. Mørkrid, H. Ijsselstijn, R. Emblem. Traumatic stress, mental health and quality of life in adolescents with esophageal atresia. Journal of Pediatric Surgery. 2020; ():1.

Chicago/Turabian Style

A. Mikkelsen; B. Boye; T.H. Diseth; U. Malt; L. Mørkrid; H. Ijsselstijn; R. Emblem. 2020. "Traumatic stress, mental health and quality of life in adolescents with esophageal atresia." Journal of Pediatric Surgery , no. : 1.

Regular article
Published: 28 January 2020 in Acta Paediatrica
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Aim As nowadays more children survive neonatal critical illness, evaluation of long‐term morbidities becomes more important. We determined whether the parent‐reported Movement‐Assessment Battery for Children ‐ Second Edition (MABC‐2) Checklist is a proper tool to screen for motor problems in school‐aged children born with severe anatomical anomalies and, or, treated with neonatal extracorporeal membrane oxygenation. Methods We analysed data of 190/253 children (60.0% male) participating in our multidisciplinary follow‐up program who were routinely assessed at the ages of five, eight and, or, 12 years. Parents completed the Checklist prior to assessment of the child’s actual motor performance by a physical therapist using the MABC‐2 Test. The sensitivity and specificity of the Checklist with a cut‐off point of the 16th percentile were determined. Results The sensitivity of the MABC‐2 Checklist was 57.1%, which implies that 42.9% of the children at risk for motor problems were not identified. The specificity was 79.1%. Conclusions The low sensitivity of the MABC‐2 Checklist suggests that this instrument does not suffice to screen for motor problems in children who survived neonatal critical illness. Yet, it may help to gain insight in parental perceptions of the child’s motor performance and to provide tailored advice on lifestyle.

ACS Style

Leontien C. C. Toussaint‐Duyster; Monique H. M. Van Der Cammen‐Van Zijp; Dick Tibboel; Saskia Gischler; Joost Van Rosmalen; Hanneke Ijsselstijn. A parent‐reported standardised checklist is not sensitive to screen for motor problems at school age following neonatal critical illness. Acta Paediatrica 2020, 109, 1801 -1806.

AMA Style

Leontien C. C. Toussaint‐Duyster, Monique H. M. Van Der Cammen‐Van Zijp, Dick Tibboel, Saskia Gischler, Joost Van Rosmalen, Hanneke Ijsselstijn. A parent‐reported standardised checklist is not sensitive to screen for motor problems at school age following neonatal critical illness. Acta Paediatrica. 2020; 109 (9):1801-1806.

Chicago/Turabian Style

Leontien C. C. Toussaint‐Duyster; Monique H. M. Van Der Cammen‐Van Zijp; Dick Tibboel; Saskia Gischler; Joost Van Rosmalen; Hanneke Ijsselstijn. 2020. "A parent‐reported standardised checklist is not sensitive to screen for motor problems at school age following neonatal critical illness." Acta Paediatrica 109, no. 9: 1801-1806.

Original article
Published: 19 July 2019 in European Journal of Pediatrics
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Children with gastroschisis are at high risk of morbidity in early life, which could affect long-term outcomes. We determined parent-reported outcomes in school-aged children born in 2000–2012, using paper questionnaires. Parent-perceived child vulnerability and motor function were compared with the Dutch reference data; parent-rated data on cognition, health status, quality of life, and behavior were compared with those of controls matched for age, gender, and maternal education level. Of 77 eligible participants, 31 (40%) returned the questionnaires. Parent-reported motor function was normal in 23 (74%) children. Total scores on health status, quality of life, and behavior did not differ significantly from those of matched controls. Children with gastroschisis had lower scores on cognition (median (interquartile range); 109 (87–127)) than their matched controls (124 (113–140); p = 0.04). Neonatal intestinal failure and increased parent-perceived vulnerability were associated with lower scores on cognition (β − 25.66 (95% confidence interval − 49.41, − 1.91); − 2.76 (− 5.27, − 0.25), respectively). Conclusion: Parent-reported outcomes of school-aged children with gastroschisis were mainly reassuring. Clinicians and parents should be aware of the higher risk of cognitive problems, especially in those with neonatal intestinal failure or increased parent-perceived vulnerability. We recommend multidisciplinary follow-up at school age of children with gastroschisis and neonatal intestinal failure.

ACS Style

Annelieke Hijkoop; André B. Rietman; René M. H. Wijnen; Dick Tibboel; Titia E. Cohen-Overbeek; Joost Van Rosmalen; Hanneke Ijsselstijn. Gastroschisis at school age: what do parents report? European Journal of Pediatrics 2019, 178, 1405 -1412.

AMA Style

Annelieke Hijkoop, André B. Rietman, René M. H. Wijnen, Dick Tibboel, Titia E. Cohen-Overbeek, Joost Van Rosmalen, Hanneke Ijsselstijn. Gastroschisis at school age: what do parents report? European Journal of Pediatrics. 2019; 178 (9):1405-1412.

Chicago/Turabian Style

Annelieke Hijkoop; André B. Rietman; René M. H. Wijnen; Dick Tibboel; Titia E. Cohen-Overbeek; Joost Van Rosmalen; Hanneke Ijsselstijn. 2019. "Gastroschisis at school age: what do parents report?" European Journal of Pediatrics 178, no. 9: 1405-1412.

Journal article
Published: 13 June 2019 in Pediatric Pulmonology
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Children with congenital diaphragmatic hernia (CDH) are at risk for pulmonary morbidity. Data on longitudinal evaluation of lung function in CDH are scarce. We hypothesized that CDH patients would have impaired lung function that worsens over time. We evaluated lung function and its determinants at ages 8 and 12 years. Dynamic and static lung volumes, and diffusion capacity were measured. Extracorporeal membrane oxygenation (ECMO) treatment, the standardized European neonatal treatment protocol, patch repair, duration of ventilation, type of initial mechanical ventilation, and nitric oxide treatment were entered as covariates in linear mixed models with standard deviation score (SDS) lung function parameters (FEV1, FEF 25‐75, and K CO) as dependent variables. Seventy‐six children (27 ECMO‐treated) born between 1999 and 2009 performed 113 reliable lung function tests. Severity of airflow obstruction deteriorated significantly from age 8 to 12 years: estimated mean difference (95% confidence interval [CI]) SDS FEV1 was −0.57 (−0.79 to −0.36) and SDS FEF25‐75 was −0.63 (−0.89 to −0.37), both P < .001. Static lung volumes were within normal range and unchanged over time: estimated mean difference (95% CI) SDS TLC −0.27 (−0.58 to 0.04); P = .085. SDS KCO was below normal at 8 and 12 years and remained stable: −0.06 (−0.22 to 0.35); P = .648. These observations were irrespective of ECMO treatment. FEV1 and FEF25‐75 were negatively associated with duration of ventilation (P < .001). Baseline data were not related with TLC or KCO. CDH patients should be followed into adulthood as they are at risk for worsening airflow obstruction and decreased diffusion capacity at school age, irrespective of ECMO treatment.

ACS Style

Leontien C. C. Toussaint‐Duyster; Monique H. M. Van Der Cammen‐Van Zijp; Marjolein Spoel; Harm A. W. M. Tiddens; Dick Tibboel; Rene M. H. Wijnen; Joost Van Rosmalen; Hanneke Ijsselstijn. Lung function in school‐aged congenital diaphragmatic hernia patients; a longitudinal evaluation. Pediatric Pulmonology 2019, 54, 1257 -1266.

AMA Style

Leontien C. C. Toussaint‐Duyster, Monique H. M. Van Der Cammen‐Van Zijp, Marjolein Spoel, Harm A. W. M. Tiddens, Dick Tibboel, Rene M. H. Wijnen, Joost Van Rosmalen, Hanneke Ijsselstijn. Lung function in school‐aged congenital diaphragmatic hernia patients; a longitudinal evaluation. Pediatric Pulmonology. 2019; 54 (8):1257-1266.

Chicago/Turabian Style

Leontien C. C. Toussaint‐Duyster; Monique H. M. Van Der Cammen‐Van Zijp; Marjolein Spoel; Harm A. W. M. Tiddens; Dick Tibboel; Rene M. H. Wijnen; Joost Van Rosmalen; Hanneke Ijsselstijn. 2019. "Lung function in school‐aged congenital diaphragmatic hernia patients; a longitudinal evaluation." Pediatric Pulmonology 54, no. 8: 1257-1266.

Preprint
Published: 02 May 2019
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Patients born with esophageal atresia (EA) have a 30 times higher prevalence of infantile hypertrophic pyloric stenosis (IHPS). This makes sense from a developmental perspective as both the esophagus and the pyloric sphincter are foregut derived structures. EA and IHPS are variable features in several (monogenetic) syndromes. This, and twin and familial studies, indicates a genetic component for both conditions as single entities. We hypothesized that genetic defects, disturbing foregut morphogenesis, are responsible for this combination of malformations. Non-genetic factors could also contribute, as mice exposed to Adriamycin develop EA and in utero diethylstilbestrol exposure is associated with EA.We investigated the copy number profiles and protein coding variants of 15 patients with both EA and IHPS. As all parents were unaffected, we first considered dominant (de novo) or recessive inheritance models but could not identify putatively deleterious mutations or recessive variants. We did identify inherited variants in genes either known to be involved in EA or IHPS or important in foregut morphogenesis in all patients. Unfortunately, variant burden analysis did not show a significant difference with unaffected controls. However, the IHPS associated risk SNP rs1933683 had a significantly higher incidence (OR 3.29, p=0.009).Although the genetic variation in likely candidate genes as well as the predisposing locus near BARX1 (rs1933683) suggest a genetic component, it does not fully explain the abnormalities seen in these patients. Therefore, we hypothesize that a combination of high impact genetic, mechanical and environmental factors together can shift the balance to abnormal development.Summary statementInstead of one affected gene, the higher incidence of IHPS in EA patients is more likely the result of multiple (epi)genetic and environmental factors together shifting the balance to disease development.

ACS Style

Chantal A. Ten Kate; Rutger W.W. Brouwer; Yolande Van Bever; Vera K. Martens; Tom Brands; Nicole W.G. Van Beelen; Alice S. Brooks; Daphne Huigh; Bert J.F.M.M. Eussen; Wilfred F.J. Van Ijcken; Hanneke Ijsselstijn; Dick Tibboel; Rene M.H. Wijnen; Annelies De Klein; Robert M.W. Hofstra; Erwin Brosens. Models for infantile hypertrophic pyloric stenosis development in patients with esophageal atresia. 2019, 625921 .

AMA Style

Chantal A. Ten Kate, Rutger W.W. Brouwer, Yolande Van Bever, Vera K. Martens, Tom Brands, Nicole W.G. Van Beelen, Alice S. Brooks, Daphne Huigh, Bert J.F.M.M. Eussen, Wilfred F.J. Van Ijcken, Hanneke Ijsselstijn, Dick Tibboel, Rene M.H. Wijnen, Annelies De Klein, Robert M.W. Hofstra, Erwin Brosens. Models for infantile hypertrophic pyloric stenosis development in patients with esophageal atresia. . 2019; ():625921.

Chicago/Turabian Style

Chantal A. Ten Kate; Rutger W.W. Brouwer; Yolande Van Bever; Vera K. Martens; Tom Brands; Nicole W.G. Van Beelen; Alice S. Brooks; Daphne Huigh; Bert J.F.M.M. Eussen; Wilfred F.J. Van Ijcken; Hanneke Ijsselstijn; Dick Tibboel; Rene M.H. Wijnen; Annelies De Klein; Robert M.W. Hofstra; Erwin Brosens. 2019. "Models for infantile hypertrophic pyloric stenosis development in patients with esophageal atresia." , no. : 625921.

Original article
Published: 22 April 2019 in Pediatric Pulmonology
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Objective To improve counseling on congenital lung malformations (CLM) by describing long‐term outcomes of children either operated on or managed by observation. Study design We analyzed lung function (spirometry), exercise tolerance (Bruce treadmill), and physical growth of 8‐year‐old children with CLM who participated in our longitudinal prospective follow‐up program. The data are shown as median standard deviation scores (SDS) with IQR, or estimated marginal means (95% CI) on the basis of general linear models. Results Twenty‐nine (48%) of the 61 children had required surgery at a median age of 108 (IQR: 8‐828) days, and 32 (52%) were managed by observation. In the surgery group, all lung function measurements (except for forced vital capacity [FVC]) were significantly below 0 SDS, with median FEV1 −1.07 (IQR: −1.70 to −0.56), FEV1/FVC −1.49 (−2.62 to −0.33), and FEF25%‐75% −1.95 (−2.57 to −0.63) (all P < 0.001). Children in the observation group had normal FEV1 and FVC, whereas FEV1/FVC (−0.81 (−1.65 to −0.14)) and FEF25%‐75% (−1.14 (−1.71 to −0.22)) were significantly below 0 SDS (both P < 0.001). Mean exercise tolerance was significantly below 0 SDS in both groups (observation: −0.85 (95% CI: −1.30 to −0.41); surgery: −1.25 (−1.69 to −0.80)); eight (28%) children in the observation group and ten (40%) in the surgery group scored <−1 SDS. Physical growth was normal in both groups. Conclusion Children with CLM may be at risk for reduced lung function and exercise tolerance, especially those who required surgery. As little pulmonary morbidity was found in children with asymptomatic CLM, this study supports a watchful waiting approach in this group.

ACS Style

Annelieke Hijkoop; Marloes M. Van Schoonhoven; Joost Van Rosmalen; Dick Tibboel; Monique H. M. Van Der Cammen‐Van Zijp; Mariëlle W. Pijnenburg Md; Titia E. Cohen‐Overbeek Md; Johannes M. Schnater Md; Hanneke Ijsselstijn Md. Lung function, exercise tolerance, and physical growth of children with congenital lung malformations at 8 years of age. Pediatric Pulmonology 2019, 54, 1326 -1334.

AMA Style

Annelieke Hijkoop, Marloes M. Van Schoonhoven, Joost Van Rosmalen, Dick Tibboel, Monique H. M. Van Der Cammen‐Van Zijp, Mariëlle W. Pijnenburg Md, Titia E. Cohen‐Overbeek Md, Johannes M. Schnater Md, Hanneke Ijsselstijn Md. Lung function, exercise tolerance, and physical growth of children with congenital lung malformations at 8 years of age. Pediatric Pulmonology. 2019; 54 (8):1326-1334.

Chicago/Turabian Style

Annelieke Hijkoop; Marloes M. Van Schoonhoven; Joost Van Rosmalen; Dick Tibboel; Monique H. M. Van Der Cammen‐Van Zijp; Mariëlle W. Pijnenburg Md; Titia E. Cohen‐Overbeek Md; Johannes M. Schnater Md; Hanneke Ijsselstijn Md. 2019. "Lung function, exercise tolerance, and physical growth of children with congenital lung malformations at 8 years of age." Pediatric Pulmonology 54, no. 8: 1326-1334.

Journal article
Published: 04 February 2019 in Pediatric Pulmonology
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Objective Children with congenital diaphragmatic hernia (CDH) suffer from long‐term pulmonary morbidity. Longitudinal data of exercise capacity in these children are lacking. We hypothesized that exercise capacity would be impaired in children with CDH and deteriorates over time. We evaluated exercise capacity and its determinants in CDH patients longitudinally until 12 years of age. Design Prospective longitudinal follow‐up study in tertiary university hospital. Patients One hundred and fourteen children with CDH born between 1999 and 2012. Methods Exercise capacity was evaluated using the Bruce treadmill‐protocol at the ages of 5, 8, and 12 years. Primary outcome parameter was standard deviation score (SDS) of maximal endurance time. Data were analyzed by using linear mixed models. Results A total of 107 children (30 treated with extracorporeal membrane oxygenation [ECMO]) performed 191 reliable exercise tests. At ages 5, 8, and 12 years, the mean (95%CI) SDS endurance time was −0.44 (−0.65 to −0.24); −1.01 (−1.23 to −0.78); −1.10 (−1.40 to −0.80), respectively, all less than zero (P < 0.001). Exercise capacity declined significantly over time irrespective of ECMO‐treatment (5‐12 years: non‐ECMO P = 0.015; ECMO P = 0.006). Duration of initial hospital stay and diffusion capacity corrected for alveolar volume were associated with SDS endurance time (P < 0.001 and P = 0.039). Conclusions In CDH patients exercise capacity deteriorates between 5 and 12 years of age, irrespective of ECMO‐treatment. CDH patients may benefit from long‐term assessments of exercise capacity with timely intervention.

ACS Style

Leontien C.C. Toussaint‐Duyster Mppt; Monique H.M. Van Der Cammen-Van Zijp; Johan C. De Jongste Md; Dick Tibboel; Rene M.H. Wijnen Md; Saskia J. Gischler Md; Joost Van Rosmalen; Hanneke Ijsselstijn Md; Leontien C.C. Toussaint-Duyster. Congenital diaphragmatic hernia and exercise capacity, a longitudinal evaluation. Pediatric Pulmonology 2019, 54, 628 -636.

AMA Style

Leontien C.C. Toussaint‐Duyster Mppt, Monique H.M. Van Der Cammen-Van Zijp, Johan C. De Jongste Md, Dick Tibboel, Rene M.H. Wijnen Md, Saskia J. Gischler Md, Joost Van Rosmalen, Hanneke Ijsselstijn Md, Leontien C.C. Toussaint-Duyster. Congenital diaphragmatic hernia and exercise capacity, a longitudinal evaluation. Pediatric Pulmonology. 2019; 54 (5):628-636.

Chicago/Turabian Style

Leontien C.C. Toussaint‐Duyster Mppt; Monique H.M. Van Der Cammen-Van Zijp; Johan C. De Jongste Md; Dick Tibboel; Rene M.H. Wijnen Md; Saskia J. Gischler Md; Joost Van Rosmalen; Hanneke Ijsselstijn Md; Leontien C.C. Toussaint-Duyster. 2019. "Congenital diaphragmatic hernia and exercise capacity, a longitudinal evaluation." Pediatric Pulmonology 54, no. 5: 628-636.

Multicenter study
Published: 14 July 2018 in Archives of Disease in Childhood
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ObjectiveTo determine the incidence of refractory anastomotic strictures after oesophageal atresia (OA) repair and to identify risk factors associated with refractory strictures.MethodsRetrospective national multicentre study in patients with OA born between 1999 and 2013. Exclusion criteria were isolated fistula, inability to obtain oesophageal continuity, death prior to discharge and follow-up ResultsWe included 454 children (61% male, 7% isolated OA (Gross type A)). End-to-end anastomosis was performed in 436 (96%) children. Anastomotic leakage occurred in 13%. Fifty-eight per cent of children with an end-to-end anastomosis developed an anastomotic stricture, requiring a median of 3 (range 1–34) dilations. Refractory strictures were found in 32/436 (7%) children and required a median of 10 (range 5–34) dilations. Isolated OA (OR 5.7; p=0.012), anastomotic leakage (OR 5.0; p=0.001) and the need for oesophageal dilation ≤28 days after anastomosis (OR 15.9; pConclusionsThe incidence of refractory strictures of the end-to-end anastomosis in children treated for OA was 7%. Risk factors were isolated OA, anastomotic leakage and the need for oesophageal dilation less than 1 month after OA repair.

ACS Style

Floor W T Vergouwe; John Vlot; Hanneke Ijsselstijn; Manon C W Spaander; Joost Van Rosmalen; Matthijs W N Oomen; Jan B F Hulscher; Marc Dirix; Marco J Bruno; Maarten Schurink; René M H Wijnen. Risk factors for refractory anastomotic strictures after oesophageal atresia repair: a multicentre study. Archives of Disease in Childhood 2018, 104, 152 -157.

AMA Style

Floor W T Vergouwe, John Vlot, Hanneke Ijsselstijn, Manon C W Spaander, Joost Van Rosmalen, Matthijs W N Oomen, Jan B F Hulscher, Marc Dirix, Marco J Bruno, Maarten Schurink, René M H Wijnen. Risk factors for refractory anastomotic strictures after oesophageal atresia repair: a multicentre study. Archives of Disease in Childhood. 2018; 104 (2):152-157.

Chicago/Turabian Style

Floor W T Vergouwe; John Vlot; Hanneke Ijsselstijn; Manon C W Spaander; Joost Van Rosmalen; Matthijs W N Oomen; Jan B F Hulscher; Marc Dirix; Marco J Bruno; Maarten Schurink; René M H Wijnen. 2018. "Risk factors for refractory anastomotic strictures after oesophageal atresia repair: a multicentre study." Archives of Disease in Childhood 104, no. 2: 152-157.

Review article
Published: 26 June 2018 in Frontiers in Pediatrics
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Since the introduction of extracorporeal membrane oxygenation (ECMO), more neonates and children with cardiorespiratory failure survive. Interest has therefore shifted from reduction of mortality toward evaluation of long-term outcomes and prevention of morbidity. This review addresses the changes in ECMO population and the ECMO-treatment that may affect long-term outcomes, the diagnostic modalities to evaluate neurological morbidities and their contributions to prognostication of long-term outcomes. Most follow-up data have only become available from observational follow-up programs in neonatal ECMO-survivors. The main topics are discussed in this review. Recommendations for long-term follow up depend on the presence of neurological comorbidity, the nature and extent of the underlying disease, and the indication for ECMO. Follow up should preferably be offered as standard of care, and in an interdisciplinary, structured and standardized way. This permits evaluation of outcome data and effect of interventions. We propose a standardized approach and recommend that multiple domains should be evaluated during long-term follow up of neonates and children who needed extracorporeal life support.

ACS Style

Hanneke Ijsselstijn; Maayke Hunfeld; Raisa M. Schiller; Robert J. Houmes; Aparna Hoskote; Dick Tibboel; Arno F. J. Van Heijst. Improving Long-Term Outcomes After Extracorporeal Membrane Oxygenation: From Observational Follow-Up Programs Toward Risk Stratification. Frontiers in Pediatrics 2018, 6, 177 .

AMA Style

Hanneke Ijsselstijn, Maayke Hunfeld, Raisa M. Schiller, Robert J. Houmes, Aparna Hoskote, Dick Tibboel, Arno F. J. Van Heijst. Improving Long-Term Outcomes After Extracorporeal Membrane Oxygenation: From Observational Follow-Up Programs Toward Risk Stratification. Frontiers in Pediatrics. 2018; 6 ():177.

Chicago/Turabian Style

Hanneke Ijsselstijn; Maayke Hunfeld; Raisa M. Schiller; Robert J. Houmes; Aparna Hoskote; Dick Tibboel; Arno F. J. Van Heijst. 2018. "Improving Long-Term Outcomes After Extracorporeal Membrane Oxygenation: From Observational Follow-Up Programs Toward Risk Stratification." Frontiers in Pediatrics 6, no. : 177.

Review article
Published: 29 May 2018 in Pediatric Research
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Treatment modalities for neonates born with congenital diaphragmatic hernia (CDH) have greatly improved in recent times with a concomitant increase in survival. In 2008, CDH EURO consortium, a collaboration of a large volume of CDH centers in Western Europe, was established with a goal to standardize management and facilitate multicenter research. However, limited knowledge on long-term outcomes restricts the identification of optimal care pathways for CDH survivors in adolescence and adulthood. This review aimed to evaluate the current practice of long-term follow-up within the CDH EURO consortium centers, and to review the literature on long-term outcomes published from 2000 onward. Apart from having disease-specific morbidities, children with CDH are at risk for impaired neurodevelopmental problems and failure of educational attainments which may affect participation in society and the quality of life in later years. Thus, there is every reason to offer them long-term multidisciplinary follow-up programs. We discuss a proposed collaborative project using standardized clinical assessment and management plan (SCAMP) methodology to obtain uniform and standardized follow-up of CDH patients at an international level.

ACS Style

Hanneke Ijsselstijn; on behalf of the CDH EURO Consortium Group; Cormac Breatnach; Aparna Hoskote; Anne Greenough; Neil Patel; Irma Capolupo; Francesco Morini; Horst Scharbatke; Florian Kipfmueller; Kjetil Ertresvag; Ulrike Kraemer; Annabella Braguglia; Lucas Wessel; Arno F.J. van Heijst; Inger Moinichen; Raghnild Emblem; Dick Tibboel. Defining outcomes following congenital diaphragmatic hernia using standardised clinical assessment and management plan (SCAMP) methodology within the CDH EURO consortium. Pediatric Research 2018, 84, 181 -189.

AMA Style

Hanneke Ijsselstijn, on behalf of the CDH EURO Consortium Group, Cormac Breatnach, Aparna Hoskote, Anne Greenough, Neil Patel, Irma Capolupo, Francesco Morini, Horst Scharbatke, Florian Kipfmueller, Kjetil Ertresvag, Ulrike Kraemer, Annabella Braguglia, Lucas Wessel, Arno F.J. van Heijst, Inger Moinichen, Raghnild Emblem, Dick Tibboel. Defining outcomes following congenital diaphragmatic hernia using standardised clinical assessment and management plan (SCAMP) methodology within the CDH EURO consortium. Pediatric Research. 2018; 84 (2):181-189.

Chicago/Turabian Style

Hanneke Ijsselstijn; on behalf of the CDH EURO Consortium Group; Cormac Breatnach; Aparna Hoskote; Anne Greenough; Neil Patel; Irma Capolupo; Francesco Morini; Horst Scharbatke; Florian Kipfmueller; Kjetil Ertresvag; Ulrike Kraemer; Annabella Braguglia; Lucas Wessel; Arno F.J. van Heijst; Inger Moinichen; Raghnild Emblem; Dick Tibboel. 2018. "Defining outcomes following congenital diaphragmatic hernia using standardised clinical assessment and management plan (SCAMP) methodology within the CDH EURO consortium." Pediatric Research 84, no. 2: 181-189.

Journal article
Published: 01 April 2018 in Clinical Gastroenterology and Hepatology
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Esophageal atresia is rare, but improved surgical and intensive care techniques have increased rates of survival in children, so there are now many adults with this disorder. Many patients with esophageal atresia develop gastroesophageal reflux (GER), raising concerns about increased risk of Barrett's esophagus (BE; prevalence of 1.3%-1.6% in general population) and esophageal carcinoma. We assessed the prevalence of BE and esophageal carcinoma in this population.We performed a prospective study of 289 patients with esophageal atresia at the Department of Gastroenterology and Hepatology at Erasmus MC University Medical Center in The Netherlands, from May 2012 through March 2017. One hundred fifty-one (median age, 25.4 years; age range, 16.8-68.6 years) underwent upper endoscopies as part of a surveillance program for (pre)-malignant esophageal lesions. Biopsies were collected and analyzed by histology. We collected data on patients' use of medications, tobacco, and alcohol; gastrointestinal symptoms; ability to swallow; complaints of GER; and type of atresia and surgeries. Prevalence of esophageal squamous cell carcinoma (ESCC) was determined using data from the Netherlands Cancer Registry. The number of persons alive on January 1, 2016 in the esophageal atresia cohort and in the general Dutch population were used to calculate the 10-year prevalence of ESCC per 100,000 persons in both populations.Forty-seven percent of patients with esophageal atresia had a history of GER and 20.5% had undergone fundoplication surgery. Endoscopy revealed normal esophagus in 68.2% of patients, esophagitis in 7.3%, and columnar-lined esophagus in 24.5%. Histology revealed normal mucosa in 50.3% of patients, esophagitis in 23.2%, gastric metaplasia in 17.2%, and BE in 6.6% (at a median age of 31.6 years). A history of fundoplication surgery was associated with BE (P=.03). Three ESCCs developed, in 2 men, at ages of 42, 44, and 60 years. This corresponded to a prevalence of 0.7% in patients with esophageal atresia-a value 108-fold higher than in same age group in the general population.The prevalence of BE is 4-fold higher in young adults with esophageal atresia, and the prevalence of ESCC is 108-fold higher, than in the general population. This finding could have important implications for transition of young adults from pediatric care to adult gastroenterology departments to receive life-long endoscopic follow up to facilitate early diagnosis of relevant lesions.

ACS Style

Floor W.T. Vergouwe; Hanneke Ijsselstijn; Katharina Biermann; Nicole S. Erler; René M.H. Wijnen; Marco J. Bruno; Manon C.W. Spaander. High Prevalence of Barrett’s Esophagus and Esophageal Squamous Cell Carcinoma After Repair of Esophageal Atresia. Clinical Gastroenterology and Hepatology 2018, 16, 513 -521.e6.

AMA Style

Floor W.T. Vergouwe, Hanneke Ijsselstijn, Katharina Biermann, Nicole S. Erler, René M.H. Wijnen, Marco J. Bruno, Manon C.W. Spaander. High Prevalence of Barrett’s Esophagus and Esophageal Squamous Cell Carcinoma After Repair of Esophageal Atresia. Clinical Gastroenterology and Hepatology. 2018; 16 (4):513-521.e6.

Chicago/Turabian Style

Floor W.T. Vergouwe; Hanneke Ijsselstijn; Katharina Biermann; Nicole S. Erler; René M.H. Wijnen; Marco J. Bruno; Manon C.W. Spaander. 2018. "High Prevalence of Barrett’s Esophagus and Esophageal Squamous Cell Carcinoma After Repair of Esophageal Atresia." Clinical Gastroenterology and Hepatology 16, no. 4: 513-521.e6.

Review
Published: 01 October 2017 in Seminars in Pediatric Surgery
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Treatment modalities for newborns with anatomical congenital anomalies have greatly improved over the past decades, with a concomitant increase in survival. This review will briefly discuss specific long-term outcomes to illustrate, which domains deserve to be considered in long-term follow-up of patients with anatomical congenital anomalies. Apart from having disease-specific morbidities these children are at risk for impaired neurodevelopmental problems and school failure, which may affect participation in society in later life. There is every reason to offer them long-term multidisciplinary follow-up programs. We further provide an overview of the methodology of long-term follow-up, its significance and discuss ways to improve care for newborns with anatomical congenital anomalies from childhood into adulthood. Future initiatives should focus on transition of care, risk stratification, and multicenter collaboration.

ACS Style

Hanneke Ijsselstijn; Saskia J. Gischler; René M.H. Wijnen; Dick Tibboel. Assessment and significance of long-term outcomes in pediatric surgery. Seminars in Pediatric Surgery 2017, 26, 281 -285.

AMA Style

Hanneke Ijsselstijn, Saskia J. Gischler, René M.H. Wijnen, Dick Tibboel. Assessment and significance of long-term outcomes in pediatric surgery. Seminars in Pediatric Surgery. 2017; 26 (5):281-285.

Chicago/Turabian Style

Hanneke Ijsselstijn; Saskia J. Gischler; René M.H. Wijnen; Dick Tibboel. 2017. "Assessment and significance of long-term outcomes in pediatric surgery." Seminars in Pediatric Surgery 26, no. 5: 281-285.

Journal article
Published: 14 July 2017 in Pediatrics
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OBJECTIVES: Growth problems are reported in patients with congenital diaphragmatic hernia during the first years of life. However, it is unknown if poor growth persists during childhood. We therefore evaluated growth of patients longitudinally until 12 years of age. METHODS: This prospective study included 172 patients (43 treated with extracorporeal membrane oxygenation [ECMO]) born from 1999 to 2014. Z scores of height-for-age (HFA), weight-for-height, and distance-to-target height were calculated at 6 months of age and at 1, 2, 5, 8, and 12 years of age. Data were analyzed by using general linear models. RESULTS: At 1 year of age, the mean weight-for-height z score had declined in ECMO (−1.30, 95% confidence interval: −1.62 to −0.97) and non-ECMO patients (−0.72, 95% confidence interval: −0.91 to −0.54; P < .05). Thereafter in ECMO patients, the mean HFA z score deteriorated between 1 (−0.43, 95% confidence interval: −0.73 to −0.13) and 5 years of age (−1.08, 95% confidence interval: −1.38 to −0.78; P < .01). In non-ECMO patients, the mean HFA z score deteriorated between 2 (−0.35, 95% confidence interval: −0.53 to −0.17) and 5 years of age (−0.56, 95% confidence interval: −0.75 to −0.37; P = .002). At 12 years of age, the mean HFA z score was still less than the norm in both groups: ECMO (−0.67, 95% confidence interval: −1.01 to −0.33) versus non-ECMO (−0.49, 95% confidence interval: −0.77 to −0.20; P < .01). Adjusting for target height improved the mean height z scores but did not bring them to normal range. CONCLUSIONS: Poor linear growth persisted at 12 years of age. The pattern of early deterioration of weight gain followed by a decline in linear growth is suggestive of inadequate nutrition during infancy. Therefore, nutritional assessment and intervention should be started early and should be continued during childhood.

ACS Style

Lisette Leeuwen; Daphne S. Mous; Joost Van Rosmalen; Joanne F. Olieman; Laura Andriessen; Saskia J. Gischler; Koen F.M. Joosten; Rene M.H. Wijnen; Dick Tibboel; Hanneke Ijsselstijn; Marjolein Spoel. Congenital Diaphragmatic Hernia and Growth to 12 Years. Pediatrics 2017, 140, e20163659 .

AMA Style

Lisette Leeuwen, Daphne S. Mous, Joost Van Rosmalen, Joanne F. Olieman, Laura Andriessen, Saskia J. Gischler, Koen F.M. Joosten, Rene M.H. Wijnen, Dick Tibboel, Hanneke Ijsselstijn, Marjolein Spoel. Congenital Diaphragmatic Hernia and Growth to 12 Years. Pediatrics. 2017; 140 (2):e20163659.

Chicago/Turabian Style

Lisette Leeuwen; Daphne S. Mous; Joost Van Rosmalen; Joanne F. Olieman; Laura Andriessen; Saskia J. Gischler; Koen F.M. Joosten; Rene M.H. Wijnen; Dick Tibboel; Hanneke Ijsselstijn; Marjolein Spoel. 2017. "Congenital Diaphragmatic Hernia and Growth to 12 Years." Pediatrics 140, no. 2: e20163659.

Journal article
Published: 28 February 2017 in Pediatric Pulmonology
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BACKGROUND AND AIMS Data on long‐term outcome of exercise capacity in school‐aged children with esophageal atresia (EA) are scarce. We evaluated maximal exercise capacity and its relation to lung function. Moreover, we studied other possible determinants of exercise capacity and lung function. METHODS Exercise capacity of 63 children with EA born 1999‐2007 was evaluated at the age of 8 years with the Bruce‐protocol. Dynamic and static lung volumes, bronchodilator response and diffusion capacity were measured. Furthermore, perinatal characteristics, hospital admissions for lower respiratory tract infections (RTIs), RTIs treated with antibiotics in the past year, symptoms of gastroesophageal reflux, weight‐for‐height, and sports participation were evaluated as other potential determinants. RESULTS Exercise capacity was significantly below normal: mean (SD) SDS −0.91 (0.97); P < 0.001. All spirometric parameters were significantly below normal with significant reversibility of airflow obstruction in 13.5% of patients. Static lung volumes were significantly decreased (mean (SD) SDS TLChe −1.06 (1.29); P < 0.001). Diffusion capacity corrected for alveolar volume was normal (mean (SD) SDS KCO −0.12 (1.04)). Exercise capacity was positively associated with total lung capacity and negatively with SDS weight‐for‐height. Spirometric parameters were negatively associated with congenital cardiac malformation, duration of ventilation, and persistent respiratory morbidity. CONCLUSION Eight‐year‐old children with EA had reduced exercise capacity which was only associated with the reduction in TLChe and higher SDS weight‐for‐height. We speculate that diminished physical activity with recurrent respiratory tract infections may also play a role in reduced exercise capacity. This should be subject to further research to optimize appropriate intervention.

ACS Style

Leontien C. C. Toussaint‐Duyster Mppt; Monique H. M. Van Der Cammen-Van Zijp; Marjolein Spoel Md; Mhanfei Lam; Rene M. H. Wijnen Md; Johan C. De Jongste Md; Dick Tibboel; Joost Van Rosmalen; Hanneke Ijsselstijn Md. Determinants of exercise capacity in school-aged esophageal atresia patients. Pediatric Pulmonology 2017, 52, 1198 -1205.

AMA Style

Leontien C. C. Toussaint‐Duyster Mppt, Monique H. M. Van Der Cammen-Van Zijp, Marjolein Spoel Md, Mhanfei Lam, Rene M. H. Wijnen Md, Johan C. De Jongste Md, Dick Tibboel, Joost Van Rosmalen, Hanneke Ijsselstijn Md. Determinants of exercise capacity in school-aged esophageal atresia patients. Pediatric Pulmonology. 2017; 52 (9):1198-1205.

Chicago/Turabian Style

Leontien C. C. Toussaint‐Duyster Mppt; Monique H. M. Van Der Cammen-Van Zijp; Marjolein Spoel Md; Mhanfei Lam; Rene M. H. Wijnen Md; Johan C. De Jongste Md; Dick Tibboel; Joost Van Rosmalen; Hanneke Ijsselstijn Md. 2017. "Determinants of exercise capacity in school-aged esophageal atresia patients." Pediatric Pulmonology 52, no. 9: 1198-1205.

Multicenter study
Published: 17 September 2016 in Neonatology
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Background: Thyroid hormone concentrations may deviate from normal values during critical illness. This condition is known as nonthyroidal illness syndrome (NTIS), and it can influence the results of screening for congenital hypothyroidism (CH) during neonatal extracorporeal membrane oxygenation (ECMO). Objectives: To determine the incidence of aberrant CH screening results in ECMO-treated neonates, to identify possible determinants, and to follow up patients with abnormal thyroid hormone concentrations. Methods: In this retrospective cohort study, we included 168 ECMO-treated neonates admitted from 2004 to 2014 and screened by protocol and divided them into the following 3 groups: group 1 (screened during ECMO, n = 107), group 2 (screened shortly before ECMO, n = 26), and group 3 (screened shortly after ECMO, n = 35). Results: CH screening results were aberrant in 67.3% (72/107) of the neonates screened during ECMO, in 73.1% (19/26) of the neonates screened before ECMO, and in 31.4% (11/35) of the neonates screened after ECMO (p Conclusions: Aberrant CH screening results were found in most ECMO-treated neonates screened before or during ECMO, which is likely due to NTIS. Follow-up of thyroid hormone concentrations is best started after recovery from critical illness. Our results suggest that thyroxine therapy is not required during ECMO.

ACS Style

Lisette Leeuwen; Arno F.J. Van Heijst; Sanne Vijfhuize; Leonardus W.J.E. Beurskens; Gert Weijman; Dick Tibboel; Erica L.T. Van Den Akker; Hanneke Ijsselstijn. Nationwide Evaluation of Congenital Hypothyroidism Screening during Neonatal Extracorporeal Membrane Oxygenation. Neonatology 2016, 111, 93 -99.

AMA Style

Lisette Leeuwen, Arno F.J. Van Heijst, Sanne Vijfhuize, Leonardus W.J.E. Beurskens, Gert Weijman, Dick Tibboel, Erica L.T. Van Den Akker, Hanneke Ijsselstijn. Nationwide Evaluation of Congenital Hypothyroidism Screening during Neonatal Extracorporeal Membrane Oxygenation. Neonatology. 2016; 111 (2):93-99.

Chicago/Turabian Style

Lisette Leeuwen; Arno F.J. Van Heijst; Sanne Vijfhuize; Leonardus W.J.E. Beurskens; Gert Weijman; Dick Tibboel; Erica L.T. Van Den Akker; Hanneke Ijsselstijn. 2016. "Nationwide Evaluation of Congenital Hypothyroidism Screening during Neonatal Extracorporeal Membrane Oxygenation." Neonatology 111, no. 2: 93-99.

Pediatric critical care
Published: 01 June 2016 in Critical Care Medicine
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Objectives: To assess neuropsychologic outcome in 17- and 18-year–old neonatal extracorporeal membrane oxygenation survivors. Design: A prospective longitudinal follow-up study. Setting: Follow-up program at the Erasmus MC-Sophia Children’s Hospital in Rotterdam, The Netherlands. Patients: Thirty adolescents 17 or 18 years old, treated between 1991 and 1997, underwent neuropsychologic assessment. Interventions: None. Measurements and Main Results: Attention, memory, executive functioning, visual-spatial functions, social-emotional functioning, and behavior were assessed with validated instruments, and data were compared with reference data. Included predictors for analysis of adverse outcome were diagnosis, age at start extracorporeal membrane oxygenation, convulsions, and use of antiepileptics. Adolescents’ performance (expressed as mean [sd] z score) was significantly lower than the norm on short-term and long-term verbal memory (z score = −1.40 [1.58], p = 0.016; z score = −1.54 [1.67], p = 0.010, respectively), visual-spatial memory (z score = −1.65 [1.37], p = 0.008; z score = −1.70 [1.23], p = 0.008, respectively), and working memory (32% vs 9% in the norm population). Parents reported more problems for their children regarding organization of materials (z score = −0.60 [0.90]; p = 0.03) and behavior evaluation (z score = −0.53 [0.88]; p = 0.05) on a questionnaire. Patients reported more withdrawn/depressed behavior (z score = −0.47 [0.54]; p = 0.02), somatic complaints (z score = −0.43 [0.48]; p = 0.03), and social problems (z score = −0.41 [0.46]; p = 0.04). Patients reported more positive feelings of self-esteem and an average health status. Conclusions: Adolescents treated with neonatal extracorporeal membrane oxygenation are at risk of verbal, visual-spatial, and working memory problems. Future research should focus on 1) the longitudinal outcome of specific neuropsychologic skills in adolescence and adulthood; 2) identifying risk factors of neuropsychologic dysfunction; 3) evaluating to what extent “severity of illness” is responsible for acquired brain injury; and 4) effects of timely cognitive rehabilitation.

ACS Style

Marlous J. Madderom; Raisa M. Schiller; Saskia J. Gischler; Arno F.J. van Heijst; Dick Tibboel; Femke K. Aarsen; Hanneke Ijsselstijn. Growing Up After Critical Illness. Critical Care Medicine 2016, 44, 1182 -1190.

AMA Style

Marlous J. Madderom, Raisa M. Schiller, Saskia J. Gischler, Arno F.J. van Heijst, Dick Tibboel, Femke K. Aarsen, Hanneke Ijsselstijn. Growing Up After Critical Illness. Critical Care Medicine. 2016; 44 (6):1182-1190.

Chicago/Turabian Style

Marlous J. Madderom; Raisa M. Schiller; Saskia J. Gischler; Arno F.J. van Heijst; Dick Tibboel; Femke K. Aarsen; Hanneke Ijsselstijn. 2016. "Growing Up After Critical Illness." Critical Care Medicine 44, no. 6: 1182-1190.

Multicenter study
Published: 12 February 2016 in Pediatrics
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OBJECTIVE: To assess perceived motor competence, social competence, self-worth, health-related quality of life, and actual motor performancein 8-year-old survivors of neonatal extracorporeal membrane oxygenation (ECMO). METHODS: In a prospective nationwide study, 135 children completed the extended version of the “athletic competence” domain of the Self Perception Profile for Children (SPPC) called the m-CBSK (Motor supplement of the Competentie BelevingsSchaal voor Kinderen) to assess perceived motor competence, the SPPC, and the Pediatric Quality of Life Inventory (PedsQL), andwere tested with the Movement Assessment Battery for Children. SD scores (SDS) were used to compare with the norm. RESULTS: The mean (SD) SDS for perceived motor competence, social competence, and self-worth were all significantly higher than the norm: 0.18 (0.94), P = .03; 0.35 (1.03), P < .001; and 0.32 (1.08), P < .001, respectively. The total PedsQL score was significantly below the norm: mean (SD) SDS: –1.26 (1.53), P < .001. Twenty-two percent of children had actual motor problems. The SDS m-CBSK and actual motor performance did not correlate (r = 0.12; P = .17). The SDS m-CBSK significantly correlated with the athletic competence domain of the SPPC (r = 0.63; P < .001). CONCLUSIONS: Eight-year-old ECMO survivors feel satisfied with their motor- and social competence, despite impaired PedsQL scores and motor problems. Because motor problems in ECMO survivorsdeteriorate throughout childhood, clinicians should be aware that these patients may tend to “overrate” their actual motor performance. Education andstrict monitoring of actual motor performanceare important to enable timelyintervention.

ACS Style

Leontien C.C. Toussaint; Monique H.M. Van Der Cammen-Van Zijp; Anjo J. Janssen; Dick Tibboel; Arno van Heijst; Hanneke Ijsselstijn. Perceived Motor Competence Differs From Actual Performance in 8-Year-Old Neonatal ECMO Survivors. Pediatrics 2016, 137, e20152724 .

AMA Style

Leontien C.C. Toussaint, Monique H.M. Van Der Cammen-Van Zijp, Anjo J. Janssen, Dick Tibboel, Arno van Heijst, Hanneke Ijsselstijn. Perceived Motor Competence Differs From Actual Performance in 8-Year-Old Neonatal ECMO Survivors. Pediatrics. 2016; 137 (3):e20152724.

Chicago/Turabian Style

Leontien C.C. Toussaint; Monique H.M. Van Der Cammen-Van Zijp; Anjo J. Janssen; Dick Tibboel; Arno van Heijst; Hanneke Ijsselstijn. 2016. "Perceived Motor Competence Differs From Actual Performance in 8-Year-Old Neonatal ECMO Survivors." Pediatrics 137, no. 3: e20152724.

Journal article
Published: 01 December 2015 in Neonatology
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ACS Style

René M. Wijnen; Dick Tibboel; Kitty G. Snoek; Irma Capolupo; Annabella Braguglia; Lucia Aite; Joost van Rosmalen; Laura Valfrè; Pietro Bagolan; Hanneke Ijsselstijn; Brian A. Darlow; Sadia Hossain; Prakesh S. Shah; Xiang Y. Ye; Shoo K. Lee; Kei Lui; Haiqing Leng; Haiyan Wang; Biyun Lin; Guoqiang Cheng; Laishuan Wang; Juliann M. Di Fiore; Thomas Raffay; Richard J. Martin; Anjum Jafri; Peter M. MacFarlane; Brent Reyburn; Y.S. Prakash; Yiu-Fai Cheung; Lijian Xie; Yuet-Yee Chee; Kar-Yin Wong; Michael Obladen; Moran Gil; Uri P. Dior; Liron Kogan; Smadar Eventov-Friedman; Raz Bahar; Shay Porat; Ronit Calderon-Margalit; Zivanit Ergaz; Nicola Laforgia; Federico Schettini; Delia De Mattia; Domenico Martinelli; Grazia Ladisa; Veronica Favia; J.D. Corcoran; Adam T. James; Colm R. Breatnach; Orla Franklin; Luc Mertens; Afif El-Khuffash; Jennifer A. Dawson; Peter A. Dargaville; Omid Sadeghi Fathabadi; Timothy J. Gale; Kathleen Lim; Brian P. Salmon; Kevin I. Wheeler; Jan C. Olivier; Robert D. Christensen; Josef T. Prchal; Daniel T. Malleske; Diane K. Lambert; Vickie L. Baer; Leslie E. Denson; Erick Gerday; Kimberlee A. Weaver Lewis; JuLyn G. Shepherd; Marc R. Mendler; Mohammad A. Hassan; Li Huang; Markus Waitz; Benjamin Mayer; Helmut D. Hummler; Claudia Weber; Satz Mengensatzproduktion; Druckerei Stückle; On Behalf Of The Canadian Neonatal Network And Australian And New Zealand Neonatal Network. Erratum. Neonatology 2015, 109, 13 -13.

AMA Style

René M. Wijnen, Dick Tibboel, Kitty G. Snoek, Irma Capolupo, Annabella Braguglia, Lucia Aite, Joost van Rosmalen, Laura Valfrè, Pietro Bagolan, Hanneke Ijsselstijn, Brian A. Darlow, Sadia Hossain, Prakesh S. Shah, Xiang Y. Ye, Shoo K. Lee, Kei Lui, Haiqing Leng, Haiyan Wang, Biyun Lin, Guoqiang Cheng, Laishuan Wang, Juliann M. Di Fiore, Thomas Raffay, Richard J. Martin, Anjum Jafri, Peter M. MacFarlane, Brent Reyburn, Y.S. Prakash, Yiu-Fai Cheung, Lijian Xie, Yuet-Yee Chee, Kar-Yin Wong, Michael Obladen, Moran Gil, Uri P. Dior, Liron Kogan, Smadar Eventov-Friedman, Raz Bahar, Shay Porat, Ronit Calderon-Margalit, Zivanit Ergaz, Nicola Laforgia, Federico Schettini, Delia De Mattia, Domenico Martinelli, Grazia Ladisa, Veronica Favia, J.D. Corcoran, Adam T. James, Colm R. Breatnach, Orla Franklin, Luc Mertens, Afif El-Khuffash, Jennifer A. Dawson, Peter A. Dargaville, Omid Sadeghi Fathabadi, Timothy J. Gale, Kathleen Lim, Brian P. Salmon, Kevin I. Wheeler, Jan C. Olivier, Robert D. Christensen, Josef T. Prchal, Daniel T. Malleske, Diane K. Lambert, Vickie L. Baer, Leslie E. Denson, Erick Gerday, Kimberlee A. Weaver Lewis, JuLyn G. Shepherd, Marc R. Mendler, Mohammad A. Hassan, Li Huang, Markus Waitz, Benjamin Mayer, Helmut D. Hummler, Claudia Weber, Satz Mengensatzproduktion, Druckerei Stückle, On Behalf Of The Canadian Neonatal Network And Australian And New Zealand Neonatal Network. Erratum. Neonatology. 2015; 109 (1):13-13.

Chicago/Turabian Style

René M. Wijnen; Dick Tibboel; Kitty G. Snoek; Irma Capolupo; Annabella Braguglia; Lucia Aite; Joost van Rosmalen; Laura Valfrè; Pietro Bagolan; Hanneke Ijsselstijn; Brian A. Darlow; Sadia Hossain; Prakesh S. Shah; Xiang Y. Ye; Shoo K. Lee; Kei Lui; Haiqing Leng; Haiyan Wang; Biyun Lin; Guoqiang Cheng; Laishuan Wang; Juliann M. Di Fiore; Thomas Raffay; Richard J. Martin; Anjum Jafri; Peter M. MacFarlane; Brent Reyburn; Y.S. Prakash; Yiu-Fai Cheung; Lijian Xie; Yuet-Yee Chee; Kar-Yin Wong; Michael Obladen; Moran Gil; Uri P. Dior; Liron Kogan; Smadar Eventov-Friedman; Raz Bahar; Shay Porat; Ronit Calderon-Margalit; Zivanit Ergaz; Nicola Laforgia; Federico Schettini; Delia De Mattia; Domenico Martinelli; Grazia Ladisa; Veronica Favia; J.D. Corcoran; Adam T. James; Colm R. Breatnach; Orla Franklin; Luc Mertens; Afif El-Khuffash; Jennifer A. Dawson; Peter A. Dargaville; Omid Sadeghi Fathabadi; Timothy J. Gale; Kathleen Lim; Brian P. Salmon; Kevin I. Wheeler; Jan C. Olivier; Robert D. Christensen; Josef T. Prchal; Daniel T. Malleske; Diane K. Lambert; Vickie L. Baer; Leslie E. Denson; Erick Gerday; Kimberlee A. Weaver Lewis; JuLyn G. Shepherd; Marc R. Mendler; Mohammad A. Hassan; Li Huang; Markus Waitz; Benjamin Mayer; Helmut D. Hummler; Claudia Weber; Satz Mengensatzproduktion; Druckerei Stückle; On Behalf Of The Canadian Neonatal Network And Australian And New Zealand Neonatal Network. 2015. "Erratum." Neonatology 109, no. 1: 13-13.

Journal article
Published: 28 October 2015 in Acta Paediatrica
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This study prospectively evaluated neuropsychological functioning in 8-year-old patients with anorectal malformation (ARM) and Hirschsprung's disease (HD). School functioning and behaviour were assessed in a standardised interview. Intelligence, attention, self-esteem and quality of life were evaluated with validated tests and questionnaires. The following predictors were assessed: socio-economic status, number of episodes of general anaesthesia, laxative treatment and premature birth. Severely intellectually disabled patients were excluded. In total, twelve of the 23 (52%) patients with ARM and 11 (55%) of the 20 patients with HD received special education or remedial teaching. The intelligence quotient was normal: mean (standard deviation or SD) was 98 (17) and 96 (17), respectively. However, sustained attention was below the norm: mean (SD) Z-score was −1.90 (1.94) and −1.43 (1.98) for ARM and HD patients; both p < 0.01. Self-esteem was normal: mean (SD) Z-score was 0.10 (1.29) and −0.20 (1.11) for ARM and HD patients. Quality of life was normal in ARM patients and slightly impaired in HD patients. No predictors for neuropsychological outcome were identified. Despite normal intelligence, more than half of these patients received special education or remedial teaching. In addition, problems with sustained attention were found. These findings are important for long-term care.

ACS Style

Desiree Van Den Hondel; Femke K. Aarsen; René M.H. Wijnen; Cornelius E.J. Sloots; Hanneke Ijsselstijn. Children with congenital colorectal malformations often require special education or remedial teaching, despite normal intelligence. Acta Paediatrica 2015, 105, e77 -e84.

AMA Style

Desiree Van Den Hondel, Femke K. Aarsen, René M.H. Wijnen, Cornelius E.J. Sloots, Hanneke Ijsselstijn. Children with congenital colorectal malformations often require special education or remedial teaching, despite normal intelligence. Acta Paediatrica. 2015; 105 (2):e77-e84.

Chicago/Turabian Style

Desiree Van Den Hondel; Femke K. Aarsen; René M.H. Wijnen; Cornelius E.J. Sloots; Hanneke Ijsselstijn. 2015. "Children with congenital colorectal malformations often require special education or remedial teaching, despite normal intelligence." Acta Paediatrica 105, no. 2: e77-e84.