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

Thomas Hopkins, Eunbi Kwon, Allison Lapins, Nathan Gill, Angela Roberts, Emily Rogalski
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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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通过测量原发性进行性失语症患者与健康相关的生活质量来评估疾病影响
引言 健康相关生活质量(HRQoL)的测量对于了解疾病对身体健康以外的影响以及相对于其他疾病的影响非常重要,但很少有人对原发性进行性失语症(PPA)进行评估。 方法 使用健康效用指数-2/3(HUI2/3)对 PPA(n = 118)的总体、性别和亚型进行 HRQoL 特征描述。多元线性回归评估了 HRQoL 与语言严重程度之间的关联。 结果 多属性 HUI2/3 总分显示存在中度至重度障碍。得分没有性别差异,语义型 PPA 比非语义型 PPA 更为严重。语言严重程度得分与 HUI 多属性得分和选定的单属性测量(听力、感觉、认知和言语)有显著关联,语言障碍越轻,与 HRQoL 相关的功能能力越强。 讨论 本研究在一个相对较大的 PPA 群体中发现了较差的 HRQoL。HRQoL 测量有助于确定患者观点、政策决策和资源分配。研究结果可用于倡导对 PPA 的支持。 亮点 原发性进行性失语症(PPA)对健康相关的生活质量有负面影响。 健康效用指数得分与 PPA 患者的 Western Aphasia Battery 表现相关。 PPA 语言障碍的严重程度与较差的生活质量有关。
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来源期刊
CiteScore
10.10
自引率
2.10%
发文量
134
审稿时长
10 weeks
期刊介绍: Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.
期刊最新文献
Assessment of disease impact through health-related quality of life measurement in primary progressive aphasia Understanding recent advances in non-amyloid/non-tau (NANT) biomarkers and therapeutic targets in Alzheimer's disease The African Initiative for Bioinformatics Online Training in Neurodegenerative Diseases (AI-BOND): Investing in the next generation of African neuroscientists Predicting regional tau accumulation with machine learning-based tau-PET and advanced radiomics Site-level factors affecting nursing home implementation of a personalized music intervention: Qualitative analyses from Music & Memory: A Pragmatic Trial for Nursing Home Residents with Alzheimer's Disease (METRIcAL)
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