Heritable connective tissue disorders in childhood: Decreased health-related quality of life and mental health
| Autor: | Warnink-Kavelaars, J, de Koning, LE, Rombaut, Lies, Menke, LA, Alsem, MW, van Oers, HA, Buizer, AI, Engelbert, RHH, Oosterlaan, J, Pediatric Heritable Connective Tissue Disorder study, group |
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| Přispěvatelé: | Rehabilitation medicine, AMS - Rehabilitation & Development, ARD - Amsterdam Reproduction and Development, Graduate School, General Paediatrics, ANS - Cellular & Molecular Mechanisms, ANS - Complex Trait Genetics, Child and Adolescent Psychiatry & Psychosocial Care, APH - Mental Health, Paediatrics, Pediatric surgery, Lectoraat Fysiotherapie - Transitie van Zorg bij Complexe Patiënten, Urban Vitality |
| Jazyk: | angličtina |
| Rok vydání: | 2022 |
| Předmět: |
Joint Instability
Male Loeys–Dietz syndrome Adolescent heritable connective tissue disorder Loeys-Dietz syndrome humanities Marfan syndrome Mental Health Ehlers-Danlos syndromes Connective Tissue Health-Related Quality of Life Ehlers–Danlos syndromes Medicine and Health Sciences Genetics Quality of Life Skin Abnormalities Humans Ehlers-Danlos Syndrome Female Connective Tissue Diseases Genetics (clinical) childhood |
| Zdroj: | American journal of medical genetics. Part A, 188(7), 2096-2109. Wiley-Liss Inc. American Journal of Medical Genetics Part A, 188(7), 2096-2109. Wiley-Liss Inc. Pediatric Heritable Connective Tissue Disorder study group 2022, ' Heritable connective tissue disorders in childhood : Decreased health-related quality of life and mental health ', American Journal of Medical Genetics Part A, vol. 188, no. 7, pp. 2096-2109 . https://doi.org/10.1002/ajmg.a.62750 American Journal of Medical Genetics-Part A, 188(7), 2096-2109. John Wiley & Sons, Inc. AMERICAN JOURNAL OF MEDICAL GENETICS PART A |
| ISSN: | 1552-4825 1552-4833 |
| Popis: | 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, with Marfan syndrome (MFS, n = 74), Loeys-Dietz syndrome (n = 8), molecular confirmed Ehlers-Danlos syndromes (n = 15), and hypermobile Ehlers-Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p |
| Databáze: | OpenAIRE |
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