Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review
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Generic preference-based quality of life (PbQoL) measures are sometimes criticized for being insensitive or failing to capture important aspects of quality of life (QoL) in specific populations. The objective of this study was to systematically review and assess the construct validity and responsiveness of PbQoL measures in Parkinson’s.
Ten databases were systematically searched up to July 2015. Studies were included if a PbQoL instrument along with a common Parkinson’s clinical or QoL measure was used, and the utility values were reported. The PbQoL instruments were assessed for construct validity (discriminant and convergent validity) and responsiveness.
Twenty-three of 2758 studies were included, of which the majority evidence was for EQ-5D. Overall good evidence of discriminant validity was demonstrated in the Health Utility Index (HUI)-3, EQ-5D-5L, EQ-5D-3L, 15D, HUI-2, and Disability and Distress Index (DDI). Nevertheless, HUI-2 and EQ-5D-3L were shown to be less sensitive among patients with mild Parkinson’s. Moderate to strong correlations were shown between the PbQoL measures (EQ-5D-3L, EQ-5D-5L, 15D, DDI, and HUI-II) and Parkinson’s-specific measures. Twelve studies provided evidence for the assessment of responsiveness of EQ-5D-3L and one study for 15D, among which six studies reached inconsistent results between EQ-5D-3L and the Parkinson’s-specific measures in measuring the change overtime.
The construct validity of the PbQoL measures was generally good, but there are concerns regarding their responsiveness to change. In Parkinson’s, the inclusion of a Parkinson’s-specific QoL measure or a generic but broader scoped mental and well-being focused measure to incorporate aspects not included in the common PbQoL measures is recommended.
KeywordsQuality of life Utility Parkinson’s Systematic review PDQ-39 EQ-5D Construct validity Responsiveness
Assessment of Quality of Life
Condition-specific preference-based measure
Disability and Distress Index
Hospital Anxiety and Depression scale
Health Utilities Index
Hoehn and Yahr scale
Incremental cost-effectiveness ratio
Minimal clinically important difference
National Institute for Health and Care Excellence
Preference-based quality of life
Parkinson’s Disease Questionnaire-39-item
Parkinson’s Disease Questionnaire-39-item-Summary Index
Parkinson’s Disease Quality of Life questionnaire
Parkinson’s Disease QUAlity of LIFe scale
People with Parkinson’s
Quality of life
Randomized controlled trials
Unified Parkinson’s Disease Rating Scale
Visual analogue scale
Compliance with ethical standards
Conflict of interest
Dr. Emma McIntosh is funded by a Parkinson’s UK Senior Fellowship. Yiqiao Xin declared no conflict of interest.
Human and animal rights
This manuscript is a systematic review which only contains data from previously published studies. No clinical trials were conducted nor patient data were collected for this research.
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