Huntington’s Disease Progression and Caregiver Burden

Clinical Neurology: Brief Report

Modrzejewska-Zielonka E.a· Ren M.b· Młodak A.c,d· Marcinkowski J.T.e· Zielonka D.f

Author affiliations

aIndywidualna Praktyka Lekarska Daniel Zielonka, Poznan, Poland
bFaculty of Mathematics and Computer Science, Adam Mickiewicz University, Poznan, Poland
cInter-Faculty Department of Mathematics and Statistics, Calisia University, Kalisz, Poland
dStatistical Office in Poznan, Branch in Kalisz, Kalisz, Poland
eDepartment of Hygiene and Epidemiology, Collegium Medicum, Zielona Gora University, Zielona Góra, Poland
fDepartment of Public Health, Poznan University of Medical Sciences, Poznan, Poland

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Article / Publication Details

First-Page Preview

Abstract of Clinical Neurology: Brief Report

Received: November 11, 2021
Accepted: March 11, 2022
Published online: April 28, 2022

Number of Print Pages: 6
Number of Figures: 0
Number of Tables: 3

ISSN: 0014-3022 (Print)
eISSN: 1421-9913 (Online)

For additional information: https://www.karger.com/ENE

Abstract

Huntington’s disease (HD) is a neurodegenerative, progressive disorder conditioned by a mutation in the HTT gene. Its progression is dependent on the causative mutation extension. Caregivers of individuals affected by HD, most often patients’ relatives, are burdened with the care. This study aims to assess the caregivers’ 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's Disease Rating Scale (UHDRS) assessments were conducted, and disease burden (DB) was calculated when caregivers were assessed in Caregiver Burden Inventory (CBI). Caregivers’ burden measured in CBI at the first visit reached 18.7 ± 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’ burden progression measured in CBI. Caregivers were burdened mostly by patients’ dependence and a discrepancy between reality and life expectations. This study indicates factors to be addressed to reduce caregivers’ burden. Strict relation between caregivers’ burden and biological and clinical progression denies conception of overloaded with care tasks or adaptation to the burden.

© 2022 S. Karger AG, Basel

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First-Page Preview

Abstract of Clinical Neurology: Brief Report

Received: November 11, 2021
Accepted: March 11, 2022
Published online: April 28, 2022

Number of Print Pages: 6
Number of Figures: 0
Number of Tables: 3

ISSN: 0014-3022 (Print)
eISSN: 1421-9913 (Online)

For additional information: https://www.karger.com/ENE

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