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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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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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Correspondence to Yiqiao Xin.

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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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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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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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