Huntington’s disease from the patient, caregiver and physician’s perspectives: three sides of the same coin?

Abstract

The aim of this study was to identify determinants of functional disability, patient’s quality of life (QoL) and caregivers’ burden in Huntington’s disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor, behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability, health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score, SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances, cognitive impairment, apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient’s QoL, while motor disturbances and depression were the predictors of the caregiver burden. Patient’s disability and QoL as well as caregivers’ burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different.

Comportamento, competência social e qualidade de vida na Doença de Huntington

“…According to the results, it appears that individuals with HD, when compared to healthy individuals, they had lower scores in all domains and global scope. These data are in agreement with findings of previous studies that identified in this respect, negative influences of the disease since the beginning of its manifestations, according to family / caregivers 14,17,26 .…”

“…Therefore, the DH impairs the mental health of individuals and may be observed suffering and emotional stress among family throughout the course of the disease 13,14 .…”

“…Using the data obtained from the Behavioral Inventory, it was observed that the SG when compared to the CG showed statistically significant differences in internalizing factors (Table 1, Figure 2) and total problems (Table 1; Figure 4), suggesting that the behavioral profile with changes involves not only the individual but also the environment where he is inserted, consequently showing losses in his social relation [11][12][13][14] .…”

“…The findings of this study confirm the literature findings, which register the presence of physical changes and functional impairment of the individual with HD as dependency factors, according to the progression of the disease, affecting also their quality of life. Therefore, they are responsible for overload of physical and mental work of family / caregiver 14,26 .…”

Deep brain stimulation for Huntington's disease: long-term results of a prospective open-label study

“…2 Depressive symptoms, 2,18,19 total functional capacity, 19,31 and cognitive performance 2,31 have been identified as the most important factors determining healthrelated quality of life (HR-QoL). Although the role of motor symptoms was secondary, UHDRS Total Motor Score was significantly correlated with the physical dimension of generic HR-QoL scales (SF-36 19 and Sickness Impact Profile…”