Karolijn Dulfer
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View article: Pediatric enteral nutrition after hospital discharge: A systematic review and toolbox for clinical practice
Pediatric enteral nutrition after hospital discharge: A systematic review and toolbox for clinical practice Open
Studies on post-discharge enteral nutritional interventions in children suggest an overall positive impact on weight-for-age z scores, with the most notable improvements observed in multifaceted approaches combining structured nutritional …
View article: Longitudinal functional and neuropsychological 2-year follow-up after intensive care admission for multisystem inflammatory syndrome in children
Longitudinal functional and neuropsychological 2-year follow-up after intensive care admission for multisystem inflammatory syndrome in children Open
The purpose of this study is to investigate long-term morbidity (physical, psychosocial, neurocognitive, quality of life (QoL)) in critical care patients with multisystem inflammatory syndrome in children (MIS-C). This prospective study ex…
View article: What Matters to Patients With Nonsyndromic Craniosynostosis and Their Parents: A Qualitative Study Informing the Development of a Patient-Reported Outcome Measures Set
What Matters to Patients With Nonsyndromic Craniosynostosis and Their Parents: A Qualitative Study Informing the Development of a Patient-Reported Outcome Measures Set Open
The primary objective of this study was to identify important concepts that hold significance for both patients with nonsyndromic craniosynostosis and their parents regarding their craniosynostosis care. The findings from this study will g…
View article: A Dutch nationwide pediatric cardiac arrest registry with long-term follow-up – towards an international prognostication guideline
A Dutch nationwide pediatric cardiac arrest registry with long-term follow-up – towards an international prognostication guideline Open
View article: Comparing effectiveness of conservative policy to craniofacial surgery in children with metopic synostosis: protocol for an observational cohort study on clinical outcomes, psychosocial well-being and costs in a Dutch academic hospital
Comparing effectiveness of conservative policy to craniofacial surgery in children with metopic synostosis: protocol for an observational cohort study on clinical outcomes, psychosocial well-being and costs in a Dutch academic hospital Open
Introduction Traditionally, surgical intervention has been the standard treatment for children with metopic synostosis, assuming that it reduces the risk of raised intracranial pressure, thereby preventing vision and cognitive impairment, …
View article: Implementing routine medical and mental health screening in children and adolescents with inflammatory bowel disease
Implementing routine medical and mental health screening in children and adolescents with inflammatory bowel disease Open
Objectives Living with inflammatory bowel disease (IBD) can have a significant impact on children. Many children with IBD experience symptoms of anxiety or depression. Routine screening for mental health has been recommended. This preregis…
View article: Bridging hospital to home for children with medical complexity and their families: an observational prospective cohort study protocol to assess the effectiveness of an innovative transitional care unit in the Netherlands (BRIDGE study)
Bridging hospital to home for children with medical complexity and their families: an observational prospective cohort study protocol to assess the effectiveness of an innovative transitional care unit in the Netherlands (BRIDGE study) Open
Introduction Children with Medical Complexities (CMC) often require 24/7 expert care, which frequently necessitates prolonged (re)admissions to a university medical centre (UMC), thereby impeding discharge to home. The transition from hosp…
View article: Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents
Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents Open
This qualitative systematic review aims to get a better understanding of what it means to live with a rare congenital craniofacial condition according to patients and their parents. Eight patient representatives provided input to this stud…
View article: On how to feed critically ill children in intensive care: A slowly shifting paradigm
On how to feed critically ill children in intensive care: A slowly shifting paradigm Open
View article: Multidimensional 1-Year Outcomes After Intensive Care Admission for Multisystem Inflammatory Syndrome in Children
Multidimensional 1-Year Outcomes After Intensive Care Admission for Multisystem Inflammatory Syndrome in Children Open
OBJECTIVES: The COVID-19 pandemic gave rise to uncertainty concerning potential sequelae related to a severe acute respiratory syndrome coronavirus 2 infection. This landscape is currently unfolding with studies reporting sequelae on vario…
View article: Health-Related Quality of Life and Fatigue in Children with Pompe Disease
Health-Related Quality of Life and Fatigue in Children with Pompe Disease Open
View article: An 18-year, single centre, retrospective study of long-term neurological outcomes in paediatric submersion-related cardiac arrests
An 18-year, single centre, retrospective study of long-term neurological outcomes in paediatric submersion-related cardiac arrests Open
View article: Predicting adverse long-term neurocognitive outcomes after pediatric intensive care unit admission
Predicting adverse long-term neurocognitive outcomes after pediatric intensive care unit admission Open
Our experiments demonstrated that machine learning can be competitive or even superior to the current testing order employed in clinical practice, suggesting that our model can be used to severely reduce the number of tests necessary for e…
View article: The efficacy of therapeutic interventions on paediatric burn patients’ height, weight, body composition, and muscle strength: A systematic review and meta-analysis
The efficacy of therapeutic interventions on paediatric burn patients’ height, weight, body composition, and muscle strength: A systematic review and meta-analysis Open
Each of the interventions had a positive effect on height, weight, body composition, or muscle strength. The decision to initiate an intervention should be made on a case-by-case basis following careful consideration of the benefits and ri…
View article: Abnormal DNA methylation within HPA-axis genes years after paediatric critical illness
Abnormal DNA methylation within HPA-axis genes years after paediatric critical illness Open
View article: Long-term multidisciplinary follow-up programs in pediatric cardiac arrest survivors
Long-term multidisciplinary follow-up programs in pediatric cardiac arrest survivors Open
View article: The first steps in the development of a cancer-specific patient-reported experience measure item bank (PREM-item bank): towards dynamic evaluation of experiences
The first steps in the development of a cancer-specific patient-reported experience measure item bank (PREM-item bank): towards dynamic evaluation of experiences Open
View article: Trends in community response and long-term outcomes from pediatric cardiac arrest: A retrospective observational study
Trends in community response and long-term outcomes from pediatric cardiac arrest: A retrospective observational study Open
Long-term favorable neurological outcome, assessed at a median 2.5 years follow-up, improved significantly over the study period. Total IQ scores did not significantly change over time. Furthermore, AED use (OR 1.21, 95%CI 1.10-1.33) and s…
View article: Early weight measures and long-term neuropsychological outcome of critically ill neonates and infants: a secondary analysis of the PEPaNIC trial
Early weight measures and long-term neuropsychological outcome of critically ill neonates and infants: a secondary analysis of the PEPaNIC trial Open
View article: A 12-week lifestyle intervention: effects on fatigue, fear, and nutritional status in children with a Fontan circulation
A 12-week lifestyle intervention: effects on fatigue, fear, and nutritional status in children with a Fontan circulation Open
Introduction Children and adolescents with a Fontan circulation are less physically active compared to healthy peers. In the current study, effects of a 12-week lifestyle intervention on fatigue, fears regarding exercise, caloric intake, r…
View article: Leg-focused high-weight resistance training improves ventricular stroke volume, exercise capacity and strength in young patients with a Fontan circulation
Leg-focused high-weight resistance training improves ventricular stroke volume, exercise capacity and strength in young patients with a Fontan circulation Open
Aims Effective therapy to improve exercise capacity in Fontan patients is lacking. Leg-focused high-weight resistance training might augment the peripheral muscle pump and thereby improve exercise capacity. Methods and results This randomi…
View article: The <scp>eXpectations</scp> of Parents regarding Anesthesiology Study (<scp>XPAS</scp>) from a parental perspective: a two‐phase observational cross‐sectional cohort study
The <span>eXpectations</span> of Parents regarding Anesthesiology Study (<span>XPAS</span>) from a parental perspective: a two‐phase observational cross‐sectional cohort study Open
Background Uncertainty concerning anesthetic procedures and risks in children requiring anesthesia may cause concerns in parents and caregivers. Aims To explore parental expectations and experiences regarding their child's anesthesia using…
View article: The association of hypoglycemia with outcome of critically ill children in relation to nutritional and blood glucose control strategies
The association of hypoglycemia with outcome of critically ill children in relation to nutritional and blood glucose control strategies Open
View article: Hospital-to-home transitions for children with medical complexity: part 2—a core outcome set
Hospital-to-home transitions for children with medical complexity: part 2—a core outcome set Open
View article: Early brain magnetic resonance imaging findings and neurodevelopmental outcome in children with congenital heart disease: A systematic review
Early brain magnetic resonance imaging findings and neurodevelopmental outcome in children with congenital heart disease: A systematic review Open
Aim To investigate the association between early brain magnetic resonance imaging (MRI) findings and neurodevelopmental outcome (NDO) in children with congenital heart disease (CHD). Method A search for studies was conducted in Embase, Med…
View article: Physical training and high‐protein diet improved muscle strength, parent‐reported fatigue, and physical quality of life in children with Pompe disease
Physical training and high‐protein diet improved muscle strength, parent‐reported fatigue, and physical quality of life in children with Pompe disease Open
Exercise has proven to be an effective adjuvant treatment to enzyme replacement therapy (ERT) in mildly affected adult Pompe patients. The aim of this study was to investigate the effects of a 12‐week tailored lifestyle intervention, consi…
View article: Neurocognitive, Psychosocial, and Quality of Life Outcomes After Multisystem Inflammatory Syndrome in Children Admitted to the PICU*
Neurocognitive, Psychosocial, and Quality of Life Outcomes After Multisystem Inflammatory Syndrome in Children Admitted to the PICU* Open
OBJECTIVES: To investigate neurocognitive, psychosocial, and quality of life (QoL) outcomes in children with Multisystem Inflammatory Syndrome in Children (MIS-C) seen 3–6 months after PICU admission. DESIGN: National prospective cohort st…
View article: Type D Personality as a Risk Factor for Adverse Outcome in Patients With Cardiovascular Disease: An Individual Patient-Data Meta-analysis
Type D Personality as a Risk Factor for Adverse Outcome in Patients With Cardiovascular Disease: An Individual Patient-Data Meta-analysis Open
Objective Type D personality, a joint tendency toward negative affectivity and social inhibition, has been linked to adverse events in patients with heart disease, although with inconsistent findings. Here, we apply an individual patient-d…
View article: Perceived stress, family impact, and changes in physical and social daily life activities of children with chronic somatic conditions during the COVID-19 pandemic
Perceived stress, family impact, and changes in physical and social daily life activities of children with chronic somatic conditions during the COVID-19 pandemic Open
Background The COVID-19 pandemic has inevitably affected children and their families. This study examines the impact of the COVID-19 measures in children with chronic somatic conditions (CSC) and their parents and compares them with a Dutc…
View article: Impact of critical illness and withholding of early parenteral nutrition in the pediatric intensive care unit on long-term physical performance of children: a 4-year follow-up of the PEPaNIC randomized controlled trial
Impact of critical illness and withholding of early parenteral nutrition in the pediatric intensive care unit on long-term physical performance of children: a 4-year follow-up of the PEPaNIC randomized controlled trial Open