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

de Koning, Lisanne E. (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); Warnink-Kavelaars, Jessica; van Rossum, Marion A.; Bosman, Diederik; Menke, Leonie A.; Malfait, Fransiska; de Boer, Rosa; Oosterlaan, Jaap; Engelbert, Raoul H.H. (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); 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

Physical activity and physical fitness in children with heritable connective tissue disorders

de Koning, Lisanne (Centre Of Expertise Urban Vitality); Warnink-Kavelaars, Jessica; van Rossum, Marion; Limmen, Selina; Van der Looven, Ruth; Muiño-Mosquera, Laura; van der Hulst, Annelies; Oosterlaan, Jaap; Rombaut, Lies; Engelbert, Raoul (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten)

Objectives: Health problems in patients with heritable connective tissue disorders (HCTD) are diverse and complex and might lead to lower physical activity (PA) and physical fitness (PF). This study aimed to investigate the PA and PF of children with heritable connective tissue disorders (HCTD). Methods: …

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

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

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 (Centre Of Expertise 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

Children and adolescents with Marfan Syndrome

de Koning, Lisanne; Warnink, Jessica; Scheper, Mark; de Vries, Janneke; Menke, Leonie; Rombaut, Lies; Engelbert, Raoul

Objective Major issues in children with Marfan syndrome (MFS) are pain, fatigue and joint hypermobility which might influence functional ability. We recently studied these aspects in children with Ehlers-Danlos syndrome hypermobility type (EDS-HT) and hypermobility spectrum disorders (HSD). What can …

2019AlgemeenConferentiebijdrage

Chronic pain in hypermobility syndrome and Ehlers–Danlos syndrome (hypermobility type): it is a challenge

M.C. Scheper; J.E. de Vries; J. Verbunt; R.H. Engelbert

Generalized joint hypermobility (GJH) is highly prevalent among patients diagnosed with chronic pain. When GJH is accompanied by pain in ≥4 joints over a period ≥3 months in the absence of other conditions that cause chronic pain, the hypermobility syndrome (HMS) may be diagnosed. In addition, GJH is …

2015-08-20GezondheidArtikel

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