Variations in Patients' Overall Assessment of Their Health Across and Within Disease Groups Using the EQ-5D Questionnaire: Protocol for a Longitudinal Study in the Swedish National Quality Registers

Fitsum Sebsibe Teni, Ola Rolfson, Nancy Devlin, David Parkin, Emma Nauclér, Kristina Burström, Swedish Quality Register (SWEQR) Study Group, Allan Abbott, Magnus Ekström, Magnus Forssblad, Peter Fritzell, Åsa Jonsson, Mikael Landén, Michael Möller, Malin Regardt, Björn Rosengren, Marcus Schmitt-Egenolf, Johanna Vinblad, Annette W-Dahl, Fitsum Sebsibe Teni, Ola Rolfson, Nancy Devlin, David Parkin, Emma Nauclér, Kristina Burström, Swedish Quality Register (SWEQR) Study Group, Allan Abbott, Magnus Ekström, Magnus Forssblad, Peter Fritzell, Åsa Jonsson, Mikael Landén, Michael Möller, Malin Regardt, Björn Rosengren, Marcus Schmitt-Egenolf, Johanna Vinblad, Annette W-Dahl

Abstract

Background: EQ-5D is one of the most commonly used questionnaires to measure health-related quality of life. It is included in many of the Swedish National Quality Registers (NQRs). EQ-5D health states are usually summarized using "values" obtained from members of the general public, a majority of whom are healthy. However, an alternative, which remains to be studied in detail, is the potential to use patients' self-reported overall health on the visual analog scale (VAS) as a means of capturing experience-based perspective.

Objective: The aim of this study is to assess EQ VAS as a valuation method with an experience-based perspective through comparison of its performance across and within patient groups, and with that of the general population in Sweden.

Methods: Data on nearly 700,000 patients from 12 NQRs covering a variety of diseases/conditions and nearly 50,000 individuals from the general population will be analyzed. The EQ-5D-3L data from the 12 registers and EQ-5D-5L data from 2 registers will be used in the analyses. Longitudinal studies of patient-reported outcomes among different patient groups will be conducted in the period from baseline to 1-year follow-up. Descriptive statistics and analyses comparing EQ-5D dimensions and observed self-assessed EQ VAS values across and within patient groups will be performed. Comparisons of the change in health state and observed EQ VAS values at 1-year follow-up will also be undertaken. Regression models will be used to assess whether EQ-5D dimensions predict observed EQ VAS values to investigate patient value sets in each patient group. These will be compared across the patient groups and with the existing Swedish experience-based VAS and time trade-off value sets obtained from the general population.

Results: Data retrieval started in May 2019 and data of patients in the 12 NQRs and from the survey conducted among the general population have been retrieved. Data analysis is ongoing on the retrieved data.

Conclusions: This research project will provide information on the differences across and within patient groups in terms of self-reported health status through EQ VAS and comparison with the general population. The findings of the study will contribute to the literature by exploring the potential of self-assessed EQ VAS values to develop value sets using an experience-based perspective.

Trial registration: ClinicalTrials.gov NCT04359628; https://ichgcp.net/clinical-trials-registry/NCT04359628.

International registered report identifier (irrid): DERR1-10.2196/27669.

Keywords: EQ VAS; EQ-5D; Swedish National Quality Registers; experience-based values; health state valuation; health-related quality of life (HRQoL); hypothetical values; patient values.

Conflict of interest statement

Conflicts of Interest: KB, ND, and DP are members of the EuroQol Group. The other authors have no conflicts to declare.

©Fitsum Sebsibe Teni, Ola Rolfson, Nancy Devlin, David Parkin, Emma Nauclér, Kristina Burström, The Swedish Quality Register (SWEQR) Study Group. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 27.08.2021.

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