Quality of Life Research

, Volume 27, Issue 7, pp 1781–1799 | Cite as

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



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).


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).


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.


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.


Quality of life Utility Instruments Child Adolescent Cerebral palsy 



The Sixteen-dimensional measure of HRQOL


The adolescent health utility measure


Assessment Quality of Life


Cost-effectiveness analysis


Child health utility 9-dimensions


Cerebral palsy quality of life


Cost–utility analysis


EuroQol-5 dimensions 3 levels


EuroQol-5 dimensions youth version


Gross motor function classification system


Health-related quality of life


Health Utilities Index


National Institute for Health and Care Excellence


Pharmaceutical Benefits Advisory Committee


Pediatric Quality of Life Inventory


Preferred reporting items for systematic reviews and meta-analysis


Patient-reported outcome measures


International Prospective Register of Systematic Reviews


Quality-adjusted life-years


Quality of life


Quality of life instrument for people with developmental disability


Quality of well-being scale


Standard deviation


Standard gamble


Time trade-off


Visual analogue scale



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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