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Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness

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Abstract

Background

Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.

Objective

The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.

Methods

Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool.

Results

The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.

Conclusions

Having established this initial validity evidence, further testing to assess internal consistency, test–retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.

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Data Availability Statement

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to acknowledge the following individuals for their support in this study: the Subject Matter Experts, Dr. Mary Vachon, Dr. Nathan Consedine, Dr. Philip Larkin, Dr. Betty Ferrell, Dr. Stephen Post, Dr. Stephen Smith, Dr. Latha Chandran, and Dr. Antonio Fernando, and Mark Hall, Research Associate, Faculty of Nursing, University of Calgary, for providing support with the data analysis.

Funding

This study was funded through a Canadian Institutes of Health Research Project Scheme Grant (#364041).

Author information

Authors and Affiliations

  1. Faculty of Nursing, University of Calgary, 2500 University Drive NW, Calgary, AB, T2N 1N4, Canada

    Shane Sinclair & Priya Jaggi

  2. Department of Oncology, Cumming School of Medicine, University of Calgary, 2500 University Drive NW, Calgary, AB, T2N 1N4, Canada

    Shane Sinclair

  3. Compassion Research Lab, Faculty of Nursing, University of Calgary, 2500 University Drive NW, Calgary, AB, T2N 1N4, Canada

    Shane Sinclair & Priya Jaggi

  4. College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, 89 Curry Place, Winnipeg, MB, R3T 2N2, Canada

    Thomas F. Hack & Susan E. McClement

  5. Psychosocial Oncology and Cancer Nursing Research, IH Asper Clinical Research Institute, 369 Taché Ave, Winnipeg, MB, R2H 2A6, Canada

    Thomas F. Hack

  6. Research Institute in Oncology and Hematology, CancerCare Manitoba, 4005E – 675 McDermot, Winnipeg, MB, R3E 0V9, Canada

    Thomas F. Hack

  7. Centre for Health Evaluation and Outcome Sciences, 588, 1081Burrard Street, Vancouver, BC, V6Z 1Y6, Canada

    Lara Russell

  8. Trinity Western University, 7600 Glover Road, Langley, BC, V2Y 1Y1, Canada

    Lara Russell

  9. Office of Patient-Centred Measurement, British Columbia Ministry of Health, C/O Providence Health Care, 1190 Hornby Street, 3rd Floor, 341F, Vancouver, BC, V6Z 2K5, Canada

    Lena Cuthbertson

  10. Population Health Sciences, Bristol Medical School, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK

    Lucy E. Selman

  11. University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD, Utrecht, The Netherlands

    Carlo Leget

Authors
  1. Shane Sinclair
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  2. Priya Jaggi
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  3. Thomas F. Hack
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  4. Lara Russell
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  5. Susan E. McClement
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  6. Lena Cuthbertson
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  7. Lucy E. Selman
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  8. Carlo Leget
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Contributions

All authors (1) made substantial contributions to the conception and design of the study, acquisition of data, and analysis and interpretation of data; (2) were involved in drafting the manuscript or revising it critically for important intellectual content; (3) gave final approval of the version to be published and have participated sufficiently in the work to take public responsibility for appropriate portions of the content; and (4) agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Corresponding author

Correspondence to Shane Sinclair.

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Conflict of Interest

The authors (SS, PJ, TFH, LR, SEM, LC, LES, and CL) declare that they have no competing interests.

Ethics Approval and Consent to Participate

This study was approved by the University of Calgary Conjoint Health Research Ethics Board (REB #17-0754).

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Sinclair, S., Jaggi, P., Hack, T.F. et al. Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness. Patient 13, 327–337 (2020). https://doi.org/10.1007/s40271-020-00409-8

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  • DOI: https://doi.org/10.1007/s40271-020-00409-8

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