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Physical fitness in children with Marfan and Loeys-Dietz syndrome

Warnink-Kavelaars, Jessica; de Koning, Lisanne E. (Urban Vitality); van der Hulst, Annelies E.; Buizer, Annemieke I.; Poissonnier, Nicole; Wijninga, Laura E.; Menke, Leonie A.; Mosquera, Laura Muiño; Rombaut, Lies; Engelbert, Raoul H.H. (Urban Vitality)

Children with Marfan (MFS) and Loeys-Dietz syndrome (LDS) report limitations in physical activities, sports, school, leisure, and work participation in daily life. This observational, cross-sectional, multicenter study explores associations between physical fitness and cardiovascular parameters, systemic …

2024-05AlgemeenArtikel

Somatic symptoms, pain, catastrophizing and the association with disability among children with heritable connective tissue disorders

de Koning, Lisanne E. (Lectoraat Fysiotherapie -Bewegen Naar Preventieve Zorg); Warnink-Kavelaars, Jessica; van Rossum, Marion A.; Bosman, Diederik; Menke, Leonie A.; Malfait, Fransiska; de Boer, Rosa; Oosterlaan, Jaap; Engelbert, Raoul H.H. (Urban Vitality); Rombaut, Lies

The aim of the present study was to investigate the nature and prevalence of nonspecific somatic symptoms, pain and catastrophizing in children with Heritable Connective Tissue Disorders (HCTD), and to determine their association with disability. This observational, multicenter study included 127 children, …

2023-07AlgemeenArtikel

Effect of physical exercise on the hippocampus and global grey matter volume in breast cancer patients

Koevoets, E.W.; Geerlings, M.I.; Monninkhof, E.M.; Mandl, R.; Witlox, L.; van der Wall, E.; Stuiver, M.M. (Lectoraat Functioneel Herstel Bij Kanker); Sonke, G.S.; Velthuis, M.J.; Jobsen, J.J.; van der Palen, J.; Bos, M.E.M.M.; Göker, E.; Menke-Pluijmers, M.B.E.; Sommeijer, D.W.; May, A.M.; de Ruiter, M.B.; Schagen, S.B.

Background Physical exercise in cancer patients is a promising intervention to improve cognition and increase brain volume, including hippocampal volume. We investigated whether a 6-month exercise intervention primarily impacts total hippocampal volume and additionally hippocampal subfield volumes, cortical …

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 -Bewegen Naar Preventieve Zorg); Rombaut, Lies; Menke, Leonie A.; Alsem, Mattijs W.; van Oers, Hedy A.; Buizer, Annemieke I.; Engelbert, Raoul H. H. (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

Heritable connective tissue disorders in childhood

Warnink-Kavelaars, Jessica; de Koning, Lisanne E (Lectoraat Fysiotherapie -Bewegen Naar Preventieve Zorg); Rombaut, Lies; Alsem, Mattijs W; Menke, Leonie A; Oosterlaan, Jaap; Buizer, Annemieke I; Engelbert, Raoul H H (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. (Urban Vitality); 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. (Urban Vitality); Nollet, Frans; Alsem, Mattijs W.; Menke, Leonie A.; Engelbert, Raoul H. H. (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

Marfan syndrome in adolescents: perspectives on restrictions in daily functioning and participation - barriers, facilitators and support needs

Warnink-Kavelaars, J; Beelen, A; Goedhart, T; Nollet, F; Alsem, M; Menke, L; Engelbert, R (Urban Vitality)

2019-05AlgemeenArtikel

Marfan syndrome in childhood: parents' perspectives of the impact on daily functioning of children, parents and family; a qualitative study

Warnink-Kavelaars, Jessica; Beelen, Anita; Dekker, Sarah; Nollet, Frans; Menke, Leonie A.; Engelbert, Raoul H.H.

Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations …

2019AlgemeenArtikel

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