A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy

  • Christine Mpundu-Kaambwa
  • Gang Chen
  • Elisabeth Huynh
  • Remo Russo
  • Julie Ratcliffe
Review

Abstract

Purpose

To examine the psychometric properties and suitability for use within the context of cerebral palsy research in children and adolescents of generic preference-based outcome measures (PROMs).

Methods

Nine electronic databases were searched in this systematic review. The consensus-based standards for the selection of health measurement instruments (COSMIN) checklist were used to measure the psychometric properties of the PROMs. A meta-analysis was used to pool correlation coefficients for convergent validity using the Schmidt–Hunter method. Heterogeneity was assessed using the I-squared statistic (I2).

Results

Four preference-based PROMs were identified from eight studies: Health Utilities Index—Mark 2 and 3 (HUI-2 and HUI-3, respectively), the Assessment Quality of Life-4 dimension (AQoL-4D) and the EuroQol-5 dimension 3 level (EQ-5D-3L). Only the HUI system was primarily developed for application with children/adolescents though health-state values for scoring the PROM were elicited from adults. The HUI-3 covered the most relevant constructs though it excludes important modules of health-related quality of life (HRQOL) such as activity limitations and participation restrictions. In terms of psychometric properties, evidence was presented for only five of COSMIN measurement properties: reliability (HUI3), measurement error (HUI-3), content validity (HUI-2 and HUI-3), Hypotheses testing (HUI-3 and AQoL-4D) and criterion validity (HUI-3). No papers reported on internal consistency, structural validity, cross-cultural validity or responsiveness of the preference-based measures in children and adolescents with cerebral palsy.

Conclusions

This review highlights the dearth in studies using preference-based PROMs to measure HRQOL associated with cerebral palsy in children and adolescents. The HUI-3 demonstrated the strongest psychometric properties, though it does not cover all dimensions relevant to this population.

Keywords

Quality of life Utility Instruments Child Adolescent Cerebral palsy 

Abbreviations

16D

The Sixteen-dimensional measure of HRQOL

AHUM

The adolescent health utility measure

AQoL

Assessment Quality of Life

CEA

Cost-effectiveness analysis

CHU9D

Child health utility 9-dimensions

CP-QOL

Cerebral palsy quality of life

CUA

Cost–utility analysis

EQ-5D-3L

EuroQol-5 dimensions 3 levels

EQ-5D-Y

EuroQol-5 dimensions youth version

GMFCS

Gross motor function classification system

HRQOL

Health-related quality of life

HUI

Health Utilities Index

NICE

National Institute for Health and Care Excellence

PBAC

Pharmaceutical Benefits Advisory Committee

PedsQL

Pediatric Quality of Life Inventory

PRISMA

Preferred reporting items for systematic reviews and meta-analysis

PROM

Patient-reported outcome measures

PROSPERO

International Prospective Register of Systematic Reviews

QALY

Quality-adjusted life-years

QoL

Quality of life

QOLdd

Quality of life instrument for people with developmental disability

QWB

Quality of well-being scale

SD

Standard deviation

SG

Standard gamble

TTO

Time trade-off

VAS

Visual analogue scale

Notes

Acknowledgements

CM is supported by the Australian Government Research Training Program Scholarship.

Author contributions

CM, GC and JR formulated the idea for the study. CM wrote the first draft and the co-authors (EH, GC, RR, JR) revised the study for important intellectual content. CM will act as a guarantor for the work.

Compliance with ethical standards

Conflict of interest

All authors declared no conflict of interest.

Research involving human and animal rights

This manuscript is a systematic review which only contains data from previously published studies. No clinical trials were conducted nor were patient data collected for this research.

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Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Institute for ChoiceUniversity of South Australia Business SchoolAdelaideAustralia
  2. 2.Centre for Health Economics, Monash Business SchoolMonash UniversityMelbourneAustralia
  3. 3.Faculty of Health Sciences, School of MedicineFlinders UniversityAdelaideAustralia
  4. 4.Department of Paediatric RehabilitationWomen’s and Children’s HospitalAdelaideAustralia

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