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Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury

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Abstract

Background

Assessing the validity of generic instruments across different clinical contexts is an important area of methodological research in economic evaluation and outcomes measurement.

Objective

Our objective was to examine the empirical validity of a generic, preference-based capability wellbeing instrument (ICECAP-A) in the context of spinal cord injury.

Methods

This study consisted of a secondary analysis of data collected using an online cross-sectional survey. The survey included questions regarding demographics, injury classifications and characteristics, secondary health conditions, quality of life and wellbeing, and functioning in activities of daily living. Analysis comprised the descriptive assessment of Spearman’s rank correlations between item-/dimension-level data for the ICECAP-A and four preference-based health-related quality of life (HRQoL) instruments, and discriminant and convergent validity approaches to examine 21 evidence-informed or theoretically derived constructs. Constructs were defined using participant and injury characteristics and responses to a range of health, wellbeing and functioning outcomes.

Results

Three hundred sixty-four individuals completed the survey. Mean index score for the ICECAP-A was 0.761; 12 (3%) individuals reported full capability (upper anchor; score = 1), and there were no reports of zero capabilities (lower anchor; score = 0). The strongest correlations were dominated by items and dimensions on the comparator (HRQoL) instruments that are non-health aspects of quality of life, such as happiness and control over one’s life (including self-care). Of 21 hypothesised constructs, 19 were confirmed in statistical tests, the exceptions being the exploratory hypotheses regarding education and age at injury.

Conclusion

The ICECAP-A is an empirically valid outcome measure for assessing capability wellbeing in people with spinal cord injury living in a community setting. The extent to which the ICECAP-A provides complementary information to preference-based HRQoL instruments is dependent on the comparator.

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Notes

  1. (1) A literal, non-technical interpretation of the QALY is that of a metric that weights periods of survival by a quality-adjustment factor. Within an extra-welfarist approach, which underpins much of current practice in economic evaluation, the quality-adjustment factor is often health related [4, 5]. Indeed, a popular school of thought is that extra-welfarism replaces ‘utility’ (the evaluative space under welfarist economics) with ‘health’ [6]. Brouwer and colleagues [4, 7] reject the idea that extra-welfarism imposes a restrictive conceptualisation of outcomes, instead proposing that it provides a more general framework for analysis, allowing elements other than utility—such as indicators of health and wellbeing (i.e., the ‘extras’ in extra-welfarism)—to be incorporated.

    (2) The statement, “there is nothing inherently … generic about the QALY” is recognition of the availability of condition-specific outcome measures that can be used to construct (condition-specific) QALYs [8,9,10].

  2. Some of the studies described as ‘general population’ in the review by Afentou and Kinghorn [44] used data from the Multi Instrument Comparison (MIC) study (http://www.aqol.com.au/index.php/aqol-current). Quota sampling was used in the MIC study to obtain a target number of respondents in each of seven disease areas (arthritis, asthma, cancer, depression, diabetes, hearing loss and heart disease) and a demographically representative sample of ‘healthy’ participants.

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Authors and Affiliations

  1. Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada

    Cassandra Mah & David G. T. Whitehurst

  2. Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Health Research Institute, Vancouver, BC, Canada

    Cassandra Mah, Stirling Bryan & David G. T. Whitehurst

  3. Praxis Spinal Cord Institute, Vancouver, BC, Canada

    Vanessa K. Noonan

  4. Blusson Spinal Cord Centre, Vancouver, BC, Canada

    Vanessa K. Noonan

  5. School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada

    Stirling Bryan

  6. International Collaboration on Repair Discoveries (ICORD), Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada

    David G. T. Whitehurst

Authors
  1. Cassandra Mah
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  2. Vanessa K. Noonan
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  3. Stirling Bryan
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  4. David G. T. Whitehurst
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Corresponding author

Correspondence to David G. T. Whitehurst.

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Funding

Financial support for this study was through a grant from the Rick Hansen Institute (Rick Hansen Institute Translational Research Program, grant #2012-29: Spinal Cord Injury & Secondary Complications: A Mixed-Methods Evaluation of Preference-Based Instruments). The funding agreement ensured the research team’s independence in designing the study, interpreting the data, and writing and publishing manuscripts. We would also like to thank the Office of the Vice-President, Research at Simon Fraser University for the Undergraduate Student Research Award for CM, and Health Utilities Inc. for the New Investigator Grant awarded to DGTW.

Conflicts of Interest

DGTW and SB are members of the EuroQol Group Association. CM, VKN, SB, and DGTW have no further conflicts of interest that are directly relevant to the content of this article.

Ethics Approval

The study was approved by the University of British Columbia Behavioural Research Ethics Board (H12-01138) and Vancouver Coastal Health Authority (#V12-01138).

Availability of Data and Material

No open access availability. Individuals interested in gaining access to the survey data should contact the corresponding author.

Consent to Participate

All study participants provided informed consent to participate (covered in the ethics approval).

Consent for Publication

The authors' intent to publish findings from the study was explicit in the informed consent procedure.

Code Availability

Not available.

Author Contributions

VKN, SB and DGTW were investigators for the primary study. CM and DGTW designed the secondary analysis plan, performed data analysis and drafted the original manuscript. All authors were involved in the interpretation of results, review of the draft manuscript, and read and approved the final version.

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Mah, C., Noonan, V.K., Bryan, S. et al. Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury. Patient 14, 223–240 (2021). https://doi.org/10.1007/s40271-020-00451-6

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  • DOI: https://doi.org/10.1007/s40271-020-00451-6

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