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

Research output: Contribution to journalArticleResearchpeer-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.

Original languageEnglish
Pages (from-to)1781-1799
Number of pages19
JournalQuality of Life Research
Volume27
Issue number7
DOIs
Publication statusPublished - Jul 2018

Keywords

  • Adolescent
  • Cerebral palsy
  • Child
  • Instruments
  • Quality of life
  • Utility

Cite this

Mpundu-Kaambwa, Christine ; Chen, Gang ; Huynh, Elisabeth ; Russo, Remo ; Ratcliffe, Julie. / A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy. In: Quality of Life Research. 2018 ; Vol. 27, No. 7. pp. 1781-1799.
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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.",
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A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy. / Mpundu-Kaambwa, Christine; Chen, Gang; Huynh, Elisabeth; Russo, Remo; Ratcliffe, Julie.

In: Quality of Life Research, Vol. 27, No. 7, 07.2018, p. 1781-1799.

Research output: Contribution to journalArticleResearchpeer-review

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