{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T01:46:16Z","timestamp":1783561576366,"version":"3.55.0"},"reference-count":28,"publisher":"S. Karger AG","issue":"5","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"},{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Eur Neurol"],"published-print":{"date-parts":[[2022]]},"abstract":"<jats:p>Huntington\u2019s disease (HD) is a neurodegenerative, progressive disorder conditioned by a mutation in the &lt;i&gt;HTT&lt;\/i&gt; gene. Its progression is dependent on the causative mutation extension. Caregivers of individuals affected by HD, most often patients\u2019 relatives, are burdened with the care. This study aims to assess the caregivers\u2019 burden cross-sectionally and longitudinally and look for biological and clinical patients-related burdening factors. In total, 144 caregiver-patient pairs observed annually for up to 8 years were included in the study. In all of the patients, demographic data were collected, Unified Huntington&amp;apos;s Disease Rating Scale (UHDRS) assessments were conducted, and disease burden (DB) was calculated when caregivers were assessed in Caregiver Burden Inventory (CBI). Caregivers\u2019 burden measured in CBI at the first visit reached 18.7 \u00b1 18.4 scores. Longitudinal observation showed no evidence for any discrepancy between clinical progression measured in UHDRS, nor biological progression measured in DB and the caregivers\u2019 burden progression measured in CBI. Caregivers were burdened mostly by patients\u2019 dependence and a discrepancy between reality and life expectations. This study indicates factors to be addressed to reduce caregivers\u2019 burden. Strict relation between caregivers\u2019 burden and biological and clinical progression denies conception of overloaded with care tasks or adaptation to the burden. <\/jats:p>","DOI":"10.1159\/000524146","type":"journal-article","created":{"date-parts":[[2022,6,17]],"date-time":"2022-06-17T21:34:34Z","timestamp":1655501674000},"page":"398-403","source":"Crossref","is-referenced-by-count":10,"title":["Huntington\u2019s Disease Progression and Caregiver Burden"],"prefix":"10.1159","volume":"85","author":[{"given":"Ewa","family":"Modrzejewska-Zielonka","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Micha\u0142","family":"Ren","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6853-9163","authenticated-orcid":false,"given":"Andrzej","family":"M\u0142odak","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jerzy Tadeusz","family":"Marcinkowski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Zielonka","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"127","published-online":{"date-parts":[[2022,4,28]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2014.12.013"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.3390\/ijms21218314"},{"key":"ref3","doi-asserted-by":"publisher","DOI":"10.3389\/fphys.2014.00380"},{"key":"ref4","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/30.5.583"},{"key":"ref5","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/20.6.649"},{"key":"ref6","doi-asserted-by":"publisher","DOI":"10.1023\/a:1023513218433"},{"key":"ref7","doi-asserted-by":"publisher","DOI":"10.1159\/000081906"},{"key":"ref8","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610215001593"},{"key":"ref9","doi-asserted-by":"publisher","DOI":"10.3233\/JHD-180326"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.1093\/arclin\/acab009"},{"key":"ref11","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2011.05727.x"},{"key":"ref12","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2007.02276.x"},{"key":"ref13","doi-asserted-by":"publisher","DOI":"10.1177\/1742395311403637"},{"key":"ref14","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2007.00784.x"},{"key":"ref15","doi-asserted-by":"publisher","DOI":"10.1037\/0090-5550.52.3.311"},{"key":"ref16","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/29.6.798"},{"key":"ref17","doi-asserted-by":"publisher","DOI":"10.2190\/2DKF-292P-A53W-W0A8"},{"key":"ref18","doi-asserted-by":"publisher","DOI":"10.1002\/mds.870130609"},{"key":"ref19","doi-asserted-by":"publisher","DOI":"10.1002\/ana.410410521"},{"key":"ref20","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320480306"},{"key":"ref21","doi-asserted-by":"publisher","DOI":"10.1037\/h0089382"},{"key":"ref22","doi-asserted-by":"publisher","DOI":"10.1037\/0882-7974.18.2.250"},{"key":"ref23","doi-asserted-by":"publisher","DOI":"10.5114\/aoms.2014.46214"},{"key":"ref24","doi-asserted-by":"publisher","DOI":"10.11604\/pamj.2017.28.284.11574"},{"key":"ref25","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610216000223"},{"key":"ref26","doi-asserted-by":"publisher","DOI":"10.3390\/ijms21228474"},{"key":"ref27","doi-asserted-by":"publisher","DOI":"10.1097\/HRP.0000000000000083"},{"key":"ref28","doi-asserted-by":"publisher","DOI":"10.1016\/j.archger.2015.06.007"}],"container-title":["European Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/524146","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/524146","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,23]],"date-time":"2025-04-23T15:58:35Z","timestamp":1745423915000},"score":1,"resource":{"primary":{"URL":"https:\/\/karger.com\/article\/doi\/10.1159\/000524146"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022]]},"references-count":28,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2022,9,20]]},"published-print":{"date-parts":[[2022,9,27]]}},"URL":"https:\/\/doi.org\/10.1159\/000524146","archive":["Portico"],"relation":{"is-supplemented-by":[{"id-type":"doi","id":"10.6084\/m9.figshare.19671498","asserted-by":"subject"}]},"ISSN":["0014-3022","1421-9913"],"issn-type":[{"value":"0014-3022","type":"print"},{"value":"1421-9913","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022]]}}}