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Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out bet...

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Autores principales: Dipasquale, Valeria, Ventimiglia, Marco, Gramaglia, Simone Maria Calogero, Parma, Barbara, Funari, Caterina, Selicorni, Angelo, Armano, Chiara, Salvatore, Silvia, Romano, Claudio
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950504/
https://www.ncbi.nlm.nih.gov/pubmed/31817352
http://dx.doi.org/10.3390/nu11122968
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author Dipasquale, Valeria
Ventimiglia, Marco
Gramaglia, Simone Maria Calogero
Parma, Barbara
Funari, Caterina
Selicorni, Angelo
Armano, Chiara
Salvatore, Silvia
Romano, Claudio
author_facet Dipasquale, Valeria
Ventimiglia, Marco
Gramaglia, Simone Maria Calogero
Parma, Barbara
Funari, Caterina
Selicorni, Angelo
Armano, Chiara
Salvatore, Silvia
Romano, Claudio
author_sort Dipasquale, Valeria
collection PubMed
description We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs’ duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment.
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spelling pubmed-69505042020-01-16 Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey Dipasquale, Valeria Ventimiglia, Marco Gramaglia, Simone Maria Calogero Parma, Barbara Funari, Caterina Selicorni, Angelo Armano, Chiara Salvatore, Silvia Romano, Claudio Nutrients Article We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs’ duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment. MDPI 2019-12-05 /pmc/articles/PMC6950504/ /pubmed/31817352 http://dx.doi.org/10.3390/nu11122968 Text en © 2019 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Dipasquale, Valeria
Ventimiglia, Marco
Gramaglia, Simone Maria Calogero
Parma, Barbara
Funari, Caterina
Selicorni, Angelo
Armano, Chiara
Salvatore, Silvia
Romano, Claudio
Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title_full Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title_fullStr Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title_full_unstemmed Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title_short Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey
title_sort health-related quality of life and home enteral nutrition in children with neurological impairment: report from a multicenter survey
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950504/
https://www.ncbi.nlm.nih.gov/pubmed/31817352
http://dx.doi.org/10.3390/nu11122968
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