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Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents
PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7142056/ https://www.ncbi.nlm.nih.gov/pubmed/31741214 http://dx.doi.org/10.1007/s11136-019-02364-w |
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author | Kassa, A-M. Dellenmark-Blom, M. Thorsell Cederberg, J. Engvall, G. Engstrand Lilja, H. |
author_facet | Kassa, A-M. Dellenmark-Blom, M. Thorsell Cederberg, J. Engvall, G. Engstrand Lilja, H. |
author_sort | Kassa, A-M. |
collection | PubMed |
description | PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents. METHODS: Patients aged 8–17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015–2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples. RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children’s HRQoL and psychological well-being were identified. The parents’ self-reports of anxiety and depression were comparable to non-clinical samples. CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association. |
format | Online Article Text |
id | pubmed-7142056 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-71420562020-04-14 Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents Kassa, A-M. Dellenmark-Blom, M. Thorsell Cederberg, J. Engvall, G. Engstrand Lilja, H. Qual Life Res Article PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents. METHODS: Patients aged 8–17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015–2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples. RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children’s HRQoL and psychological well-being were identified. The parents’ self-reports of anxiety and depression were comparable to non-clinical samples. CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association. Springer International Publishing 2019-11-18 2020 /pmc/articles/PMC7142056/ /pubmed/31741214 http://dx.doi.org/10.1007/s11136-019-02364-w Text en © The Author(s) 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Article Kassa, A-M. Dellenmark-Blom, M. Thorsell Cederberg, J. Engvall, G. Engstrand Lilja, H. Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title | Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title_full | Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title_fullStr | Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title_full_unstemmed | Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title_short | Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents |
title_sort | children and adolescents with vacterl association: health-related quality of life and psychological well-being in children and adolescents and their parents |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7142056/ https://www.ncbi.nlm.nih.gov/pubmed/31741214 http://dx.doi.org/10.1007/s11136-019-02364-w |
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