Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives

Ivan Trang; Maya Katz; Nicholas Galifianakis; Diane Fairclough; Stefan H Sillau; Janis Miyasaki; Benzi M Kluger

doi:10.1016/j.parkreldis.2020.05.036

Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives

Parkinsonism Relat Disord. 2020 Aug:77:5-10. doi: 10.1016/j.parkreldis.2020.05.036. Epub 2020 Jun 10.

Authors

Ivan Trang¹, Maya Katz², Nicholas Galifianakis², Diane Fairclough³, Stefan H Sillau¹, Janis Miyasaki⁴, Benzi M Kluger⁵

Affiliations

¹ Department of Neurology, University of Colorado School of Medicine, Aurora, CO, USA.
² Department of Neurology, University of California, San Francisco, CA, USA.
³ School of Public Health, Department of Biostatistics and Informatics, University of Colorado, Aurora, CO, USA.
⁴ Department of Medicine, Division of Neurology, University of Alberta, Edmonton, Canada.
⁵ Departments of Neurology and Medicine, University of Rochester Medical Center, Rochester, NY, USA. Electronic address: benzi_kluger@urmc.rochester.edu.

PMID: 32563809
DOI: 10.1016/j.parkreldis.2020.05.036

Abstract

Introduction: Our understanding of the determinants of quality of life (QOL) in people living with Parkinson's disease and related disorders (PDRD) has grown remarkably in the past decade. However, several areas remain understudied including determinants of general vs. health-related QOL, determinants in high-need patients, drivers of perceptions of caregivers vs. patients, and exploration of potential determinants outside of the traditional medical model.

Methods: This was a cross-sectional study of 210 PDRD patients and 175 caregivers who completed a battery of measures regarding general QOL (QOL-Alzheimer's disease; QOL-AD), health-related QOL (Parkinson's disease Questionnaire; PDQ-39), cognitive function, mood, grief, spiritual wellbeing, symptom burden, disease severity, disease stage, overall function, socioeconomic status, and healthcare utilization. Elastic net regularization modeling of variables significantly associated with our outcomes of interest were performed to determine predictors of general QOL, compare predictors of general vs. health-related QOL, and compare predictors of patient and caregiver perspectives on patient general QOL.

Results: General QOL was associated with spiritual wellbeing, depression, cognitive function, presence of a caregiver, and recent emergency department visits. In contrast, health-related QOL was associated with grief, symptom burden, income, disease stage, and utilization of counseling services. Caregiver ratings of patient general QOL were associated with patient symptom burden, patient grief, patient global function, caregiver burden, and caregiver spiritual wellbeing.

Conclusions: There are notable differences in the predictors of general QOL, health-related QOL and caregiver perspectives on patient general QOL. These differences have important implications for clinical research and models of clinical care.

Keywords: Caregiver; Palliative care; Parkinson's disease; Parkinsonism; Quality of life.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological / physiology
Aged
Aged, 80 and over
Alzheimer Disease / complications
Alzheimer Disease / psychology
Caregivers / psychology*
Cognition / physiology
Cost of Illness
Cross-Sectional Studies
Depression / psychology*
Female
Humans
Male
Middle Aged
Parkinson Disease / complications*
Parkinson Disease / psychology
Quality of Life / psychology*