Abstract
Purpose
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.
Methods
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.
Results
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.
Conclusions
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.
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Abbreviations
- AQoL:
-
Assessment of Quality of Life
- CBA:
-
Cost-benefit analysis
- CS-PBM:
-
Condition-specific preference-based measure
- CUA:
-
Cost-utility analysis
- DDI:
-
Disability and Distress Index
- EQ-5D:
-
EuroQoL EQ-5D
- HAD:
-
Hospital Anxiety and Depression scale
- HUI:
-
Health Utilities Index
- H&Y:
-
Hoehn and Yahr scale
- ICER:
-
Incremental cost-effectiveness ratio
- MCID:
-
Minimal clinically important difference
- NICE:
-
National Institute for Health and Care Excellence
- PbQoL:
-
Preference-based quality of life
- PDQ-39:
-
Parkinson’s Disease Questionnaire-39-item
- PDQ-39-SI:
-
Parkinson’s Disease Questionnaire-39-item-Summary Index
- PDQL:
-
Parkinson’s Disease Quality of Life questionnaire
- PDQUALIF:
-
Parkinson’s Disease QUAlity of LIFe scale
- PwP:
-
People with Parkinson’s
- QALY:
-
Quality-adjusted life-years
- QoL:
-
Quality of life
- RCT:
-
Randomized controlled trials
- SF-6D:
-
Short-Form 6-Dimension
- SF-36:
-
Short-Form 36-item
- SG:
-
Standard gamble
- TTO:
-
Time trade-off
- UPDRS:
-
Unified Parkinson’s Disease Rating Scale
- VAS:
-
Visual analogue scale
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Dr. Emma McIntosh is funded by a Parkinson’s UK Senior Fellowship. Yiqiao Xin declared no conflict of interest.
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Xin, Y., McIntosh, E. Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review. Qual Life Res 26, 1–23 (2017). https://doi.org/10.1007/s11136-016-1428-x
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DOI: https://doi.org/10.1007/s11136-016-1428-x