Exploring the reliability and validity of the Huntington’s Disease quality of life battery for carers (HDQoL-C) within a Polish population
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), pp. 1-10. DOI: 10.3390/ijerph16132323Publisher
MDPIJournal
International Journal of Environmental Research and Public HealthDOI
10.3390/ijerph16132323Additional Links
https://www.mdpi.com/1660-4601/16/13/2323Type
ArticleLanguage
enISSN
16617827EISSN
16604601ae974a485f413a2113503eed53cd6c53
10.3390/ijerph16132323