{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,12]],"date-time":"2025-10-12T03:42:00Z","timestamp":1760240520366,"version":"build-2065373602"},"reference-count":41,"publisher":"MDPI AG","issue":"13","license":[{"start":{"date-parts":[[2019,6,30]],"date-time":"2019-06-30T00:00:00Z","timestamp":1561852800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Huntington\u2019s 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 \u201cforgotten people\u201d in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington\u2019s 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\u2019s 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.<\/jats:p>","DOI":"10.3390\/ijerph16132323","type":"journal-article","created":{"date-parts":[[2019,7,1]],"date-time":"2019-07-01T03:23:59Z","timestamp":1561951439000},"page":"2323","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Exploring the Reliability and Validity of the Huntington\u2019s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population"],"prefix":"10.3390","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0974-0761","authenticated-orcid":false,"given":"Agnieszka","family":"Bartoszek","sequence":"first","affiliation":[{"name":"Department of Family Medicine and Community Nursing, Medical University of Lublin, Staszica 6 Str., 20-081 Lublin, Poland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aimee","family":"Aubeeluck","sequence":"additional","affiliation":[{"name":"School of Health Science, Royal Derby Hospital, University of Nottingham, Nottingham NG7 2RD, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Edward","family":"Stupple","sequence":"additional","affiliation":[{"name":"Division of Psychology, University of Derby, Derby DE22 1GB, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6840-7320","authenticated-orcid":false,"given":"Adrian","family":"Bartoszek","sequence":"additional","affiliation":[{"name":"Department of Biochemistry, Faculty of Medicine, Medical University of Lodz, 90-419 Lodz, Poland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katarzyna","family":"Kocka","sequence":"additional","affiliation":[{"name":"Department of Family Medicine and Community Nursing, Medical University of Lublin, Staszica 6 Str., 20-081 Lublin, Poland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0101-9216","authenticated-orcid":false,"given":"Barbara","family":"\u015alusarska","sequence":"additional","affiliation":[{"name":"Department of Family Medicine and Community Nursing, Medical University of Lublin, Staszica 6 Str., 20-081 Lublin, Poland"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2019,6,30]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"971","DOI":"10.1016\/0092-8674(93)90585-E","article-title":"A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington\u2019s disease chromosomes","volume":"72","author":"MacDonald","year":"1993","journal-title":"Cell"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"204","DOI":"10.1038\/nrneurol.2014.24","article-title":"Huntington disease: Natural history, biomarkers and prospects for therapeutics","volume":"10","author":"Ross","year":"2014","journal-title":"Nat. Rev. Neurol."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1136\/bmj.c3109","article-title":"Huntington\u2019s disease","volume":"340","author":"Novak","year":"2010","journal-title":"BMJ"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"342","DOI":"10.1159\/000288775","article-title":"WAIS-R Features of Preclinical Huntington\u2019s Disease: Implications for Early Detection","volume":"29","author":"Larsson","year":"2010","journal-title":"Dement. Geriatr. Cogn. Disord."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"407","DOI":"10.2217\/nmt.11.45","article-title":"Depression in the early stages of Huntington disease Huntington disease: beyond motor symptoms","volume":"1","author":"Epping","year":"2011","journal-title":"Neurodegener. Dis. Manag."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1176\/jnp.2007.19.4.441","article-title":"Psychopathology in Verified Huntington\u2019s Disease Gene Carriers","volume":"19","author":"Kingma","year":"2007","journal-title":"J. Neuropsychiatry Clin. Neurosci."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"91","DOI":"10.31887\/DCNS.2016.18.1\/pnopoulos","article-title":"Huntington disease: A single-gene degenerative disorder of the striatum","volume":"18","author":"Nopoulos","year":"2016","journal-title":"Dialogues Clin. Neurosci."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"474","DOI":"10.1007\/s11910-011-0215-x","article-title":"Cognitive impairment in Huntington disease: Diagnosis and treatment","volume":"11","author":"Paulsen","year":"2011","journal-title":"Curr. Neurol. Neurosci. Rep."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1079","DOI":"10.1016\/S2215-0366(16)30144-4","article-title":"Changes in mental state and behaviour in Huntington\u2019s disease","volume":"3","author":"Eddy","year":"2016","journal-title":"Lancet Psychiatry"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1037\/neu0000102","article-title":"Everyday cognition in prodromal huntington disease","volume":"29","author":"Williams","year":"2015","journal-title":"Neuropsychology"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1037\/a0020937","article-title":"Neurocognitive Signs in Prodromal Huntington Disease","volume":"25","author":"Stout","year":"2011","journal-title":"Neuropsychology"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1111\/j.1365-2648.2011.05727.x","article-title":"Family carer personal concerns in Huntington disease","volume":"68","author":"Williams","year":"2012","journal-title":"J. Adv. Nurs."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"789","DOI":"10.1111\/j.1365-2648.2008.04946.x","article-title":"The emotional experiences of family carers in Huntington disease","volume":"65","author":"Williams","year":"2009","journal-title":"J. Adv. Nurs."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"328","DOI":"10.12968\/bjon.2008.17.5.28830","article-title":"Huntington\u2019s disease. Part 3: family aspects of HD","volume":"17","author":"Aubeeluck","year":"2008","journal-title":"Br. J. Nurs."},{"key":"ref_15","first-page":"201","article-title":"Social perspectives in Huntington\u2019s chorea","volume":"58","author":"Hayden","year":"1980","journal-title":"S. Afr. Med. J."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"700","DOI":"10.1111\/scs.12098","article-title":"Caregiver roles in families affected by Huntington\u2019s disease: a qualitative interview study","volume":"28","author":"Malterud","year":"2014","journal-title":"Scand. J. Caring Sci."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1080\/10410230902804133","article-title":"Well-Being of family caregivers of persons with late-stage Huntington\u2019s disease: Lessons in Stress and coping","volume":"24","author":"Roscoe","year":"2009","journal-title":"Health Commun."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"137","DOI":"10.5604\/18982395.1186494","article-title":"Caring for patients with Huntington disease\u2014A survey of caregivers\u2019 experiences and views","volume":"9","author":"Domaradzki","year":"2015","journal-title":"J. Pre-Clin. Clin. Res."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1111\/j.1399-0004.2011.01823.x","article-title":"The Huntington\u2019s Disease health-related Quality of Life questionnaire (HDQoL): A disease-specific measure of health-related quality of life","volume":"81","author":"Hocaoglu","year":"2012","journal-title":"Clin. Genet."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"434","DOI":"10.1111\/j.1399-0004.2007.00784.x","article-title":"The Huntington\u2019s Disease quality of life battery for carers: Reliability and validity","volume":"71","author":"Aubeeluck","year":"2007","journal-title":"Clin. Genet."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"400","DOI":"10.1176\/appi.psy.48.5.400","article-title":"The Impact of Huntington\u2019s Disease on Family Life","volume":"48","author":"Vamos","year":"2007","journal-title":"Psychosomatics"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1037\/0090-5550.52.3.311","article-title":"Caregiver Burden in Huntington\u2019s Disease","volume":"52","author":"Pickett","year":"2007","journal-title":"Rehabil. Psychol."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1111\/j.1365-2702.2007.02276.x","article-title":"Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting","volume":"17","author":"Soltysiak","year":"2008","journal-title":"J. Clin. Nurs."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"1425","DOI":"10.1007\/s11136-011-0062-x","article-title":"\u2018All the burden on all the carers\u2019: Exploring quality of life with family caregivers of Huntington\u2019s disease patients","volume":"21","author":"Aubeeluck","year":"2012","journal-title":"Qual. Life Res."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"1093","DOI":"10.1007\/s11136-012-0227-2","article-title":"Further evidence of reliability and validity of the Huntington\u2019s disease quality of life battery for carers: Italian and French translations","volume":"22","author":"Aubeeluck","year":"2013","journal-title":"Qual. Life Res."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1177\/1471301206059757","article-title":"Capturing the Huntington\u2019s disease spousal carer experience: a preliminary investigation using the \u2018Photovoice\u2019 method","volume":"5","author":"Aubeeluck","year":"2006","journal-title":"Dementia"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"375","DOI":"10.12740\/PP\/59103","article-title":"Family caregivers\u2019 experiences with healthcare services \u2013A case of Huntington\u2019s disease","volume":"50","author":"Domaradzki","year":"2016","journal-title":"Psychiatr. Pol"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"500","DOI":"10.1111\/j.1365-2648.2009.05217.x","article-title":"Huntington disease: Families\u2019 experiences of healthcare services","volume":"66","author":"Skirton","year":"2010","journal-title":"J. Adv. Nurs."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"381","DOI":"10.3109\/13682820903105145","article-title":"Communication and Huntington\u2019s disease: Qualitative interviews and focus groups with persons with Huntington\u2019s disease, family members, and carers","volume":"45","author":"Hartelius","year":"2010","journal-title":"Int. J. Lang. Commun. Disord."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1111\/j.1399-0004.2006.00702.x","article-title":"Young people\u2019s experiences of growing up in a family affected by Huntington\u2019s disease","volume":"71","author":"Keenan","year":"2007","journal-title":"Clin. Genet."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1177\/1074840709337126","article-title":"Lou Caregiving by teens for family members with Huntington disease","volume":"15","author":"Williams","year":"2009","journal-title":"J. Fam. Nurs."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"83","DOI":"10.12968\/bjon.1997.6.2.83","article-title":"Using research to develop care for patients with Huntington\u2019s disease","volume":"6","author":"Skirton","year":"1997","journal-title":"Br. J. Nurs."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1177\/1742395311403637","article-title":"Healthcare experiences of families affected by Huntington disease: Need for improved care","volume":"7","author":"Etchegary","year":"2011","journal-title":"Chronic Illn."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1002\/ajmg.1320480306","article-title":"Forgotten person in the huntington disease family","volume":"48","author":"Kessler","year":"1993","journal-title":"Am. J. Med. Genet."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"1077","DOI":"10.1038\/sj.ejhg.5201462","article-title":"Partners of mutation-carriers for Huntington\u2019s disease: Forgotten persons?","volume":"13","author":"Decruyenaere","year":"2005","journal-title":"Eur. J. Hum. Genet."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"40","DOI":"10.1186\/1750-1172-5-40","article-title":"Huntington\u2019s disease: A clinical review","volume":"5","author":"Roos","year":"2010","journal-title":"Orphanet J. Rare Dis."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"1361","DOI":"10.1007\/s00702-012-0787-x","article-title":"Huntington\u2019s disease from the patient, caregiver and physician\u2019s perspectives: three sides of the same coin?","volume":"119","author":"Banaszkiewicz","year":"2012","journal-title":"J Neural Transm"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1111\/j.1524-4733.2005.04054.x","article-title":"Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation","volume":"8","author":"Wild","year":"2005","journal-title":"Value Heal."},{"key":"ref_39","unstructured":"Tabachnick, B., and Fidell, L. (1996). Using Multivariate Statistics, HarperCollins. [3rd ed.]."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"27","DOI":"10.26444\/jpccr\/71430","article-title":"Health policy and legal regulations concerning the functioning in society of individuals burdened with Huntington\u2019s disease and other rare diseases","volume":"7","author":"Zielonka","year":"2013","journal-title":"J. Pre-Clin. Clin. Res."},{"key":"ref_41","first-page":"69","article-title":"Obci\u0105\u017cenie opiekun\u00f3w jako czynnik delegowania opieki do instytucji psychogeriatrycznych","volume":"9","author":"Kasprzak","year":"2012","journal-title":"Psychogeriatria Pol."}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/16\/13\/2323\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T13:02:46Z","timestamp":1760187766000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/16\/13\/2323"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6,30]]},"references-count":41,"journal-issue":{"issue":"13","published-online":{"date-parts":[[2019,7]]}},"alternative-id":["ijerph16132323"],"URL":"https:\/\/doi.org\/10.3390\/ijerph16132323","relation":{},"ISSN":["1660-4601"],"issn-type":[{"type":"electronic","value":"1660-4601"}],"subject":[],"published":{"date-parts":[[2019,6,30]]}}}