Working Paper Article Version 1 This version is not peer-reviewed

Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population

Version 1 : Received: 25 May 2019 / Approved: 27 May 2019 / Online: 27 May 2019 (11:53:51 CEST)

A peer-reviewed article of this Preprint also exists.

Bartoszek, A.; Aubeeluck, A.; Stupple, E.; Bartoszek, A.; Kocka, K.; Ślusarska, B. Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population. Int. J. Environ. Res. Public Health 2019, 16, 2323. Bartoszek, A.; Aubeeluck, A.; Stupple, E.; Bartoszek, A.; Kocka, K.; Ślusarska, B. Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population. Int. J. Environ. Res. Public Health 2019, 16, 2323.

Journal reference: Int. J. Environ. Res. Public Health 2019, 16, 2323
DOI: 10.3390/ijerph16132323

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 as “forgotten people” in HD family, also in 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. 90 carers recruited from the Enroll-HD study in Polish research centres of the European Huntington`s Disease Network completed a polish translation of the HDQoL-C. Data was subjected to Principle Components Analysis 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.

Subject Areas

Huntington's disease; quality of life; family caregiving; reliability and validity; factor analysis; Poland

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