ArticleInternational journal of environmental research and public health2019
Exploring the Reliability and Validity of the Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population.
Article in International journal of environmental research and public health, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed, 3 citations in OpenAlex.
- Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.Scientific reports · 2024Article
- Understanding Psychosocial Wellbeing in the Context of Complex and Multidimensional Problems.International journal of environmental research and public health · 2020Article
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Authors and funding
6 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
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.
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