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Instructions for Administering the Canadian Occupational Performance Measure with Children Themselves

Verkerk, Gijs; van der Molen-Meulmeester, Lisanne (Faculteit Gezondheid); van Hartingsveldt, Margo (Lectoraat Ergotherapie - Participatie En Omgeving); Alsem, Mattijs

AIMS: The Canadian Occupational Performance Measure (COPM) can be used to support children to clarify their needs themselves. However, for pediatric occupational therapists it is not sufficiently clear how to effectively use the COPM with children from 8 years of age.This study aimed to formulate specific …

2023AlgemeenArtikel

Heritable connective tissue disorders in childhood: Decreased health-related quality of life and mental health

Warnink-Kavelaars, Jessica; de Koning, Lisanne E. (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); Rombaut, Lies; Menke, Leonie A.; Alsem, Mattijs W.; van Oers, Hedy A.; Buizer, Annemieke I.; Engelbert, Raoul H. H. (Centre Of Expertise Urban Vitality); Oosterlaan, Jaap

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 observational multicenter study included 126 children, aged 4–18 years, …

2022-07AlgemeenArtikel

Physical Functioning After Admission to the PICU: A Scoping Review

Bossen, Daniël (Centre Of Expertise Urban Vitality); de Boer, Rosa M.; Knoester, Hendrika; Maaskant, Jolanda M.; van der Schaaf, Marike (Faculteit Gezondheid); Alsem, Mattijs W.; Gemke, Reinoud J. B. J.; van Woensel, Job B. M.; Oosterlaan, Jaap; Engelbert, Raoul H. H. (Centre Of Expertise Urban Vitality)

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 clinical and research knowledge gaps. Data Sources: A systematic search …

2021-06AlgemeenAndersoortig materiaal

Heritable connective tissue disorders in childhood

Warnink-Kavelaars, Jessica; de Koning, Lisanne E (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); Rombaut, Lies; Alsem, Mattijs W; Menke, Leonie A; Oosterlaan, Jaap; Buizer, Annemieke I; Engelbert, Raoul H H (Centre Of Expertise Urban Vitality); On Behalf Of The Pediatric Heritable Connective Tissue Disorders Study Group

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, disability and general health with standardized validated questionnaires. …

2021-05-28AlgemeenArtikel

Parenting a child with Marfan syndrome

Warnink-Kavelaars, Jessica; van Oers, Hedy A.; Haverman, Lotte; Buizer, Annemieke I.; Alsem, Mattijs W.; Engelbert, Raoul H. H. (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); Menke, Leonie A.

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 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, …

2021-01AlgemeenArtikel

Marfan syndrome in adolescence: adolescents' perspectives on (physical) functioning, disability, contextual factors and support needs

Warnink-Kavelaars, Jessica; Beelen, Anita; Goedhart, Tine M. H. J.; de Koning, Lisanne E. (Centre Of Expertise Urban Vitality); Nollet, Frans; Alsem, Mattijs W.; Menke, Leonie A.; Engelbert, Raoul H. H. (Centre Of Expertise Urban Vitality)

Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual …

2019-12AlgemeenArtikel

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