Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia

Abstract INTRODUCTION Measurements of health‐related quality of life (HRQoL) are important for capturing disease impact beyond physical health and relative to other diseases but have rarely been assessed in primary progressive aphasia (PPA). METHODS HRQoL was characterized overall, by sex and subtyp...

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Main Authors: Thomas Hopkins, Eunbi Kwon, Allison Lapins, Nathan Gill, Angela Roberts, Emily Rogalski
Format: Article
Language:English
Published: Wiley 2024-10-01
Series:Alzheimer’s & Dementia: Translational Research & Clinical Interventions
Subjects:
Online Access:https://doi.org/10.1002/trc2.12499
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author Thomas Hopkins
Eunbi Kwon
Allison Lapins
Nathan Gill
Angela Roberts
Emily Rogalski
author_facet Thomas Hopkins
Eunbi Kwon
Allison Lapins
Nathan Gill
Angela Roberts
Emily Rogalski
author_sort Thomas Hopkins
collection DOAJ
description Abstract INTRODUCTION Measurements of health‐related quality of life (HRQoL) are important for capturing disease impact beyond physical health and relative to other diseases but have rarely been assessed in primary progressive aphasia (PPA). METHODS HRQoL was characterized overall, by sex and subtype in PPA (n = 118) using the Health Utilities Index‐2/3 (HUI2/3). Multiple linear regression assessed associations between HRQoL and language severity. RESULTS Multi‐attribute HUI2/3 summary scores indicated moderate to severe impairment. Scores did not differ by sex and were more severe for semantic than non‐semantic PPA. Language severity scores showed significant associations with HUI multi‐attribute scores and select single‐attribute measures (hearing, sensation, cognition, and speech) with less language impairment associated with better functional capacity related to HRQoL. DISCUSSION This study identified poor HRQoL in a relatively large PPA cohort. HRQoL measures aid in determining patient perspective, policy decision making, and resource allocation. Results may be used to advocate for PPA support. Highlights Primary progressive aphasia (PPA) negatively impacts health‐related quality of life. Health utilities index scores are associated with Western Aphasia Battery performance in PPA. Severity of language impairment in PPA is associated with poorer quality of life.
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series Alzheimer’s & Dementia: Translational Research & Clinical Interventions
spelling doaj-art-61a10f04f44042689bb4f61c4933084d2024-12-27T12:20:32ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372024-10-01104n/an/a10.1002/trc2.12499Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasiaThomas Hopkins0Eunbi Kwon1Allison Lapins2Nathan Gill3Angela Roberts4Emily Rogalski5Department of Neurology Biologic Sciences Division, Healthy Aging and Alzheimer's Research Care Center University of Chicago Chicago Illinois USAMesulam Center for Cognitive Neurology and Alzheimer's Disease Northwestern University Feinberg School of Medicine Chicago Illinois USAMesulam Center for Cognitive Neurology and Alzheimer's Disease Northwestern University Feinberg School of Medicine Chicago Illinois USADivision of Biostatistics Department of Preventive Medicine Northwestern University Feinberg School of Medicine Chicago Illinois USADepartment of Computer Science School of Communication Sciences and Disorders Western University London Ontario CanadaDepartment of Neurology Biologic Sciences Division, Healthy Aging and Alzheimer's Research Care Center University of Chicago Chicago Illinois USAAbstract INTRODUCTION Measurements of health‐related quality of life (HRQoL) are important for capturing disease impact beyond physical health and relative to other diseases but have rarely been assessed in primary progressive aphasia (PPA). METHODS HRQoL was characterized overall, by sex and subtype in PPA (n = 118) using the Health Utilities Index‐2/3 (HUI2/3). Multiple linear regression assessed associations between HRQoL and language severity. RESULTS Multi‐attribute HUI2/3 summary scores indicated moderate to severe impairment. Scores did not differ by sex and were more severe for semantic than non‐semantic PPA. Language severity scores showed significant associations with HUI multi‐attribute scores and select single‐attribute measures (hearing, sensation, cognition, and speech) with less language impairment associated with better functional capacity related to HRQoL. DISCUSSION This study identified poor HRQoL in a relatively large PPA cohort. HRQoL measures aid in determining patient perspective, policy decision making, and resource allocation. Results may be used to advocate for PPA support. Highlights Primary progressive aphasia (PPA) negatively impacts health‐related quality of life. Health utilities index scores are associated with Western Aphasia Battery performance in PPA. Severity of language impairment in PPA is associated with poorer quality of life.https://doi.org/10.1002/trc2.12499Alzheimer's diseasefrontotemporal dementiafrontotemporal lobar degenerationHealth Utilities Indexneuropsychologylanguage impairment
spellingShingle Thomas Hopkins
Eunbi Kwon
Allison Lapins
Nathan Gill
Angela Roberts
Emily Rogalski
Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
Alzheimer’s & Dementia: Translational Research & Clinical Interventions
Alzheimer's disease
frontotemporal dementia
frontotemporal lobar degeneration
Health Utilities Index
neuropsychology
language impairment
title Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
title_full Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
title_fullStr Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
title_full_unstemmed Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
title_short Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia
title_sort assessment of disease impact through health related quality of life measurement in primary progressive aphasia
topic Alzheimer's disease
frontotemporal dementia
frontotemporal lobar degeneration
Health Utilities Index
neuropsychology
language impairment
url https://doi.org/10.1002/trc2.12499
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