Background: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer-carer perspective and carer-patient perspective.
Methods: A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients' self-reported QoL ratings and two types of carer-reported QoL ratings: carer-patient and carer-carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.
Results: Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers' QoL ratings.
Conclusion: Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.
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http://dx.doi.org/10.1017/S1041610211002493 | DOI Listing |
Neurol Ther
January 2025
Biohaven Pharmaceuticals, Inc, 215 Church Street, New Haven, CT, 06510, USA.
Introduction: The Friedreich Ataxia Rating Scale-Activities of Daily Living (FARS-ADL) is a valid, highly utilized measure for assessing ADL impacts in patients with Friedreich ataxia. We provide evidence of the psychometric validity of the FARS-ADL in two cohorts of patients with spinocerebellar ataxia (SCA).
Methods: Using data from a cohort of real-world subjects with SCA (recruited at Massachusetts General Hospital [MGH]; n = 33) and a phase 3 trial of troriluzole in adults with SCA (NCT03701399 [Study 206]; n = 217), comprising a subset of patients with the SCA3 genotype (n = 89), the psychometric measurement properties and minimal change thresholds of the FARS-ADL were examined.
J Oral Facial Pain Headache
June 2024
Rehabilitation Medicine Center, The First Dongguan Affiliated Hospital, Guangdong Medical University, 523710 Dongguan, Guangdong, China.
Repetitive transcranial magnetic stimulation (rTMS) is a non-invasive technique used to treat neuropathic orofacial pain (NOP). This study aimed to evaluate the efficacy and safety of rTMS in managing NOP and reducing health risks. A comprehensive literature search was conducted in various databases, including PubMed, Physiotherapy Evidence Database (PEDro), the Cochrane Library, Web of Science, Embase and Clinical Trials.
View Article and Find Full Text PDFJ Indian Soc Pedod Prev Dent
October 2024
Department of Pediatric and Preventive Dentistry, Goa Dental College and Hospital, Bambolim, Goa, India.
Context: The oral health-related early childhood quality of life (OH-ECQoL) tool, designed to evaluate how dental issues affect preschoolers' and their family's quality of life (QoL), has been translated and validated in many languages. However, it has not yet been adapted into the Konkani language.
Aim: Cross-cultural adaptation of OH-ECQoL tool for use in the Konkani-speaking population in the state of Goa among primary caregivers of children aged 24-71 months.
J Clin Med
December 2024
Neurology Department, Burgos University Hospital, 09006 Burgos, Spain.
: Huntington's disease (HD) is a neurodegenerative movement disorder associated with significant disability and impairment of Activities of Daily Living (ADLs). The impact of upper limb disability on quality of life (QoL) and its influence on ADLs is not well known yet. The aim of this study was to describe the manipulative dexterity, strength, and manual eye coordination of patients with manifest and premanifest-HD compared to healthy individuals and to analyze its influence on ADLs and QoL.
View Article and Find Full Text PDFHealthcare (Basel)
January 2025
Department of Psychological and Brain Sciences, Boston University, 900 Commonwealth Ave., 2nd Floor, Boston, MA 02215, USA.
Social isolation and health-related consequences of the COVID-19 pandemic may have significantly impacted quality of life in people with Parkinson's disease (PwPD). The effect of the COVID-19 pandemic specifically on subjective cognition and social functioning in PwPD is poorly understood. We conducted a longitudinal analysis of changes in subjective cognitive and social functioning in PwPD before (T1, 2017-2019) and during (T2, 2021) the COVID-19 pandemic.
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