Mattijs W. Alsem
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View article: Quality of life and mental health in children with long COVID
Quality of life and mental health in children with long COVID Open
PLC can severely impact HRQoL and mental and social health in children. Screening of these outcomes and individualized management of children with PLC should be a vital part of clinical care for these highly burdened patients.
View article: Hospital to Home Transitions for Children With Medical Complexity: A Scoping Review of Healthcare Professionals’ Experiences
Hospital to Home Transitions for Children With Medical Complexity: A Scoping Review of Healthcare Professionals’ Experiences Open
Background Hospital‐to‐home (H2H) transitions for children with medical complexity (CMC) are challenging and time‐intensive, often overwhelming parents due to insufficient care coordination, poor communication among healthcare professional…
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: Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care
Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care Open
View article: Exploring the “shared” in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals?
Exploring the “shared” in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals? Open
View article: A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making
A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making Open
View article: Correction to: Clinical-based phenotypes in children with pediatric post-COVID-19 condition
Correction to: Clinical-based phenotypes in children with pediatric post-COVID-19 condition Open
There is an error in the abstract in the following sentence: suffered relatively more from fever, had significantly fewer symptoms (median age of 5 years compared to 8 and 10 years for clusters 1 and 2, respectively), etc.However, the medi…
View article: A Multidisciplinary Approach: Management and Rehabilitation of Children With Pediatric Post-COVID-19 Condition
A Multidisciplinary Approach: Management and Rehabilitation of Children With Pediatric Post-COVID-19 Condition Open
Post-COVID-19 condition in children is a still largely unknown syndrome with a diverse pattern of symptoms, which can have a major impact on daily life. Currently, there are no evidence-based proven treatments, and the focus is on symptom …
View article: Clinical-based phenotypes in children with pediatric post-COVID-19 condition
Clinical-based phenotypes in children with pediatric post-COVID-19 condition Open
Background Pediatric post coronavirus disease 2019 (COVID-19) condition (PPCC) is a heterogeneous syndrome, which can significantly affect the daily lives of children. This study aimed to identify clinically meaningful phenotypes in childr…
View article: Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation
Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation Open
View article: A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment Open
Background Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family…
View article: The development and validation of the S‐scan‐parental self‐management support (S‐scan ‐ PS): A self‐reflection tool for child healthcare professionals
The development and validation of the S‐scan‐parental self‐management support (S‐scan ‐ PS): A self‐reflection tool for child healthcare professionals Open
Background Professionals providing self‐management support to parents regarding the care for their child with a chronic condition nowadays is an important aspect of child healthcare. This requires professionals to orient themselves towards…
View article: Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies
Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies Open
Background Advances in diagnostic and therapeutic interventions for rare diseases result in greater survival rates, with on the flipside an expanding group of children with medical complexity (CMC). When CMC leave the protective hospital e…
View article: Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study
Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study Open
View article: Palliative care for children: methodology for the development of a national clinical practice guideline
Palliative care for children: methodology for the development of a national clinical practice guideline 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: Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes
Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes Open
Outcome selection to evaluate interventions to support a successful transition from hospital to home of children with medical complexity (CMC) may be difficult due to the variety in available outcomes. To support researchers in outcome sel…
View article: Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study.
Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study. Open
Background A systematic literature review on the transition from hospital-to-home (H2H) of families with a child with medical complexity (CMC), resulted in nine overarching themes. These demonstrated common needs and experiences despite th…
View article: Clinical-Based Phenotypes in Children with Pediatric Post-COVID Condition
Clinical-Based Phenotypes in Children with Pediatric Post-COVID Condition Open
View article: Instructions for Administering the Canadian Occupational Performance Measure with Children Themselves
Instructions for Administering the Canadian Occupational Performance Measure with Children Themselves Open
There is consensus on 40 specific instructions for administering the COPM with children. Following these instructions might help children to formulate their own goals for intervention.
View article: Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study
Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study Open
View article: Heritable connective tissue disorders in childhood: Decreased health‐related quality of life and mental health
Heritable connective tissue disorders in childhood: Decreased health‐related quality of life and mental health Open
The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health‐Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This obse…
View article: Physical Functioning After Admission to the PICU: A Scoping Review
Physical Functioning After Admission to the PICU: A Scoping Review Open
Objectives: To conduct a scoping review to 1) describe findings and determinants of physical functioning in children during and/or after PICU stay, 2) identify which domains of physical functioning are measured, 3) and synthesize the clini…
View article: Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health
Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health Open
Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, di…
View article: Exploring the 'shared'in shared decision making in child health
Exploring the 'shared'in shared decision making in child health Open
View article: How children and their parents value using the Canadian Occupational Performance Measure (COPM) with children themselves
How children and their parents value using the Canadian Occupational Performance Measure (COPM) with children themselves Open
PURPOSE: Although the Canadian Occupational Performance Measure (COPM) is used with children, it is unclear how they and their parents experience this. This study aims to investigate the opinions of children and their parents about the COP…
View article: Parenting a child with Marfan syndrome: Distress and everyday problems
Parenting a child with Marfan syndrome: Distress and everyday problems Open
Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mother…
View article: Therapy needs and possibilities in paediatric rehabilitation during the COVID‐19 lockdown in the Netherlands
Therapy needs and possibilities in paediatric rehabilitation during the COVID‐19 lockdown in the Netherlands Open
Although children's health is not directly affected to the same extent as adults by the COVID-19 pandemic, the measures taken by governments to restrain the spread of the virus have a big impact on children with disabilities and their fami…
View article: Designing a tool to support patient and public involvement in research projects: the Involvement Matrix
Designing a tool to support patient and public involvement in research projects: the Involvement Matrix Open
View article: Een kind met een acute 'flaccid' myelitis geassocieerd met enterovirus D68: A child with acute flaccid myelitis associated with enterovirus D68
Een kind met een acute 'flaccid' myelitis geassocieerd met enterovirus D68: A child with acute flaccid myelitis associated with enterovirus D68 Open