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Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease

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Abstract

Purpose

The Edmonton Symptom Assessment System-Revised: Renal (ESAS-r: Renal) is a disease-specific patient-reported outcome measure (PROM) that assesses symptoms common in chronic kidney disease (CKD). There is no preference-based scoring system for the ESAS-r: Renal or a mapping algorithm to predict health utility values. We aimed to develop a mapping algorithm from the ESAS-r: Renal to the Canadian EQ-5D-5L index scores.

Methods

We used data from a multi-centre cluster randomized-controlled trial of the routine measurement and reporting of PROMs in hemodialysis units in Northern Alberta, Canada. In two arms of the trial, both the ESAS-r: Renal and the EQ-5D-5L were administered to CKD patients undergoing hemodialysis. We used data from one arm for model estimation, and data from the other for validation. We explored direct and indirect mapping models; model selection was based on statistical fit and predictive power.

Results

Complete data were available for 506 patient records in the estimation sample and 242 in the validation sample. All models tended to perform better in patients with good health, and worse in those with poor health. Generalized estimating equations (GEE) and generalized linear model (GLM) on selected ESAS-r: Renal items were selected as final models as they fitted the best in estimation and validation sample.

Conclusion

When only ESAS-r: Renal data are available, one could use GEE and GLM to predict EQ-5D-5L index scores for use in economic evaluation. External validation on populations with different characteristics is warranted, especially where renal-specific symptoms are more prevalent.

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Acknowledgements

We would like to acknowledge the contributions of the following individuals for designing, planning, and implementing the EMPATHY Trial in Alberta Kidney Care—North: Buzinski R, Davison SN, Duperron P (deceased), Johnson JA, Klarenbach S, Nhan J, Short H, Wasylynuk BA. We appreciate the following individuals for providing insights into this paper: Angie Chiu, Katherine Harback, Manikarnika Kanjilal, Negar Razavilar. The statistics assistance provided by Sentil Senthilselvan and Peiran Yao was greatly appreciated.

Funding

EMPATHY is a project of the Can-SOLVE CKD Network, supported by the Canadian Institutes of Health Research under Canada’s Strategy for Patient-Oriented Research (Reference #SCA-145103). This large network supports a large number of research projects, including the EMPATHY Trial and provides basic infrastructure and resources. Walsh M is supported by a Clive Kearon Mid Career Research Award from the Department of Medicine.

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Authors and Affiliations

  1. School of Public Health, University of Alberta, Edmonton, AB, Canada

    Jiabi Wen, Fatima Al Sayah, Hilary Short, Arto Ohinmaa & Jeffrey A. Johnson

  2. Centre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, China

    Xuejing Jin

  3. Division of Nephrology and Immunology, Department of Medicine, University of Alberta, Edmonton, AB, Canada

    Sara N. Davison

  4. Department of Medicine, McMaster University, Hamilton, ON, Canada

    Michael Walsh

  5. Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Canada

    Michael Walsh

  6. Population Health Research Institute, Hamilton, Canada

    Michael Walsh

  7. St. Joseph’s Healthcare Hamilton, Hamilton, Canada

    Michael Walsh

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  1. Jiabi Wen
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  2. Xuejing Jin
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  3. Fatima Al Sayah
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  8. Jeffrey A. Johnson
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Corresponding author

Correspondence to Jeffrey A. Johnson.

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Conflict of interests

The authors have no conflicts of interest to declare that are relevant to the content of this article.

Ethical approval and consent to participate

The University of Alberta Health Research Ethics Board granted the EMPATHY trial ethics approval (Pro00077850) to be conducted under a waiver of consent. This was considered appropriate because PROM collection was occurring already, or was planned to be implemented, as determined by the renal program; the intervention (linking the PROM to patient/provider discussion) is of minimal risk to patients, and all treatments are ascribed based on the provider judgment, not by study protocol; seeking informed consent would not be feasible in the framework of making this part of routine clinical care; seeking informed consent would likely bias participation resulting in inaccurate estimations of effect which would render the results of the trial uninformative for the use of these measures as part of routine care.

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Wen, J., Jin, X., Al Sayah, F. et al. Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease. Qual Life Res 31, 567–577 (2022). https://doi.org/10.1007/s11136-021-02948-5

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