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

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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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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

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Acknowledgements

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

Author information

Authors and Affiliations

  1. Institute for Choice, University of South Australia Business School, Level 3 Way Lee Building, North Terrace, Adelaide, SA, 5001, Australia

    Christine Mpundu-Kaambwa, Elisabeth Huynh & Julie Ratcliffe

  2. Centre for Health Economics, Monash Business School, Monash University, Melbourne, Australia

    Gang Chen

  3. Faculty of Health Sciences, School of Medicine, Flinders University, Adelaide, Australia

    Remo Russo

  4. Department of Paediatric Rehabilitation, Women’s and Children’s Hospital, Adelaide, Australia

    Remo Russo

Authors
  1. Christine Mpundu-Kaambwa
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  2. Gang Chen
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  3. Elisabeth Huynh
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  4. Remo Russo
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  5. Julie Ratcliffe
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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.

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Correspondence to Christine Mpundu-Kaambwa.

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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.

Appendix 1: MEDLINE search strategy

Appendix 1: MEDLINE search strategy

Database(s): Ovid MEDLINE(R) in-process and other non-indexed citations and Ovid MEDLINE(R) 1946 to present. Includes subsets: ePUB ahead of print, in-process and other non-indexed citations, Ovid MEDLINE(R) daily.

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Searches

1

Cerebral palsy/

2

(Cerebral pals* or cerebral palsy or spastic diplegia* or little disease or little’s disease or hemiplegia or quadriplegia).tw,kw

3

1 or 2

4

Adolescent/ or child/

5

(Child* or adolescen* or teen* or pediatric* or paediatric* or youth or young* toddler or infant).tw,kw

6

4 or 5

7

“Quality of Life”/ or quality-adjusted life years/

8

(“quality of life” or QoL or HRQOL or HRQL or HRQOL or QL or health related QOL or hql or hqol or h-qol or hr-qol or quality adjusted life or qaly* or qald* or qale* or qtime* or disability adjusted life or daly* or health utilit* or health outcomes or patient outcome or functioning or activit* or participation or health status or functional status).tw,kw

9

(Quality adj2 (well-being or wellbeing)).tw,kw

10

qwb.tw,kw

11

or/7–10

12

3 and 6 and 11

13

“surveys and questionnaires”/ or self-report/

14

(Instrument* or tool* or measure* or test* or dimension* or multidimension* or scale* or rating* or item response or properties or domain* or psychometric* or modified or schedule* or evaluat* or classification* or inventor* or index or indice* or scale* or question* or form or valid* reliab* assess* repeatability or acceptability or responsiveness or feasibility or PROM or child report or self-assess* or preference-based instrument* or multi-attribute utility* or cost utility).tw,kw

15

13 or 14

16

12 and 15

17

Limit 16 to English language

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Mpundu-Kaambwa, C., Chen, G., Huynh, E. et al. A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy. Qual Life Res 27, 1781–1799 (2018). https://doi.org/10.1007/s11136-018-1837-0

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