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Quality of Life Research

, Volume 26, Issue 1, pp 1–23 | Cite as

Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review

  • Yiqiao Xin
  • Emma McIntosh
Review

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.

Keywords

Quality of life Utility Parkinson’s Systematic review PDQ-39 EQ-5D Construct validity Responsiveness 

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

Notes

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.

Supplementary material

11136_2016_1428_MOESM1_ESM.docx (25 kb)
Supplementary material 1 (DOCX 24 kb)

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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.Health Economics and Health Technology Assessment (HEHTA), Institute of Health and Wellbeing (IHW)University of GlasgowGlasgowUK

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