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Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population
Huntington’s disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the d...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6651847/ https://www.ncbi.nlm.nih.gov/pubmed/31262100 http://dx.doi.org/10.3390/ijerph16132323 |
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author | Bartoszek, Agnieszka Aubeeluck, Aimee Stupple, Edward Bartoszek, Adrian Kocka, Katarzyna Ślusarska, Barbara |
author_facet | Bartoszek, Agnieszka Aubeeluck, Aimee Stupple, Edward Bartoszek, Adrian Kocka, Katarzyna Ślusarska, Barbara |
author_sort | Bartoszek, Agnieszka |
collection | PubMed |
description | Huntington’s disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the disease have a great impact on the quality of life of family carers. The caregivers are called the “forgotten people” in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) within a Polish population. A total of 90 carers recruited from the Enroll-HD study in Polish research centers of the European Huntington’s Disease Network completed a polish translation of the HDQoL-C. Data were subjected to Principle Components Analysis (PCA) and reliability measures. The Polish version of the shortened versions of the HDQoL-C is similarly valid compared to the original English version and suitable for use within this population. The HDQoL-C has previously demonstrated a wide range of benefits for practitioners in capturing and understanding carer experience and these benefits can now be extended to Polish speaking populations. |
format | Online Article Text |
id | pubmed-6651847 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-66518472019-08-08 Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population Bartoszek, Agnieszka Aubeeluck, Aimee Stupple, Edward Bartoszek, Adrian Kocka, Katarzyna Ślusarska, Barbara Int J Environ Res Public Health Article Huntington’s disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the disease have a great impact on the quality of life of family carers. The caregivers are called the “forgotten people” in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) within a Polish population. A total of 90 carers recruited from the Enroll-HD study in Polish research centers of the European Huntington’s Disease Network completed a polish translation of the HDQoL-C. Data were subjected to Principle Components Analysis (PCA) and reliability measures. The Polish version of the shortened versions of the HDQoL-C is similarly valid compared to the original English version and suitable for use within this population. The HDQoL-C has previously demonstrated a wide range of benefits for practitioners in capturing and understanding carer experience and these benefits can now be extended to Polish speaking populations. MDPI 2019-06-30 2019-07 /pmc/articles/PMC6651847/ /pubmed/31262100 http://dx.doi.org/10.3390/ijerph16132323 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 Bartoszek, Agnieszka Aubeeluck, Aimee Stupple, Edward Bartoszek, Adrian Kocka, Katarzyna Ślusarska, Barbara Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title | Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title_full | Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title_fullStr | Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title_full_unstemmed | Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title_short | Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population |
title_sort | exploring the reliability and validity of the huntington’s disease quality of life battery for carers (hdqol-c) within a polish population |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6651847/ https://www.ncbi.nlm.nih.gov/pubmed/31262100 http://dx.doi.org/10.3390/ijerph16132323 |
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