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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

Bartoszek, Agnieszka; Aubeeluck, Aimeee; Stupple, Edward; Bartoszek, Adrian; Kocka, Katarzyna; ?lusarska, Barbara

Authors

Agnieszka Bartoszek

AIMEE AUBEELUCK aimee.aubeeluck@nottingham.ac.uk
Professor of Health Psychology Education

Edward Stupple

Adrian Bartoszek

Katarzyna Kocka

Barbara ?lusarska



Abstract

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.

Citation

Bartoszek, A., Aubeeluck, A., Stupple, E., Bartoszek, A., Kocka, K., & Ślusarska, B. (2019). Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population. International Journal of Environmental Research and Public Health, 16(13), 1-10. https://doi.org/10.3390/ijerph16132323

Journal Article Type Article
Acceptance Date Jun 28, 2019
Online Publication Date Jun 30, 2019
Publication Date Jun 30, 2019
Deposit Date Jul 2, 2019
Publicly Available Date Jul 2, 2019
Journal International Journal of Environmental Research and Public Health
Print ISSN 1660-4601
Electronic ISSN 1660-4601
Publisher MDPI
Peer Reviewed Peer Reviewed
Volume 16
Issue 13
Article Number 2323
Pages 1-10
DOI https://doi.org/10.3390/ijerph16132323
Keywords Huntington’s disease; quality of life; family caregiving; reliability and validity; factor analysis; Poland
Public URL https://nottingham-repository.worktribe.com/output/2258224
Publisher URL https://www.mdpi.com/1660-4601/16/13/2323

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