Accepted for/Published in: JMIR Research Protocols
Date Submitted: Feb 2, 2021
Date Accepted: Jun 29, 2021
How does patients’ overall assessment of their health vary across and within disease groups? A study protocol for a longitudinal study of health-related quality of life using the EQ-5D questionnaire in the Swedish National Quality Registers
ABSTRACT
Background:
EQ-5D is one of the most commonly employed patient-reported outcome (PRO) measures. It is included in many of the Swedish National Quality Registers (NQRs). EQ-5D health states are usually summarized using ‘values’ obtained from healthy members of the general public. However an alternative – which remains to be studied in detail – is the potential to use patients’ self-reported overall health on the visual analogue scale as a means of capturing experience-based values.
Objective:
The overall aim of this project is to increase knowledge on the potential applicability of EQ VAS as a health state valuation method through assessment of its variability across and within patient groups and compared 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 from the general population will be analysed. Longitudinal studies of PROs among different patient groups will be conducted at baseline/first visit and 1-year follow-up. Descriptive statistics and analyses comparing EQ-5D health states 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 over 1-year follow-up will also be made. 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 (TTO) value sets obtained from the general population.
Results:
Data retrieval started in May 2019 and data of patients in 11 of the 12 NQRs and from the survey conducted among the general population have been retrieved. Data analyses is ongoing on the data retrieved so far.
Conclusions:
This research project will provide information on the variation among different patient groups in terms of self-reported health status through EQ VAS and comparison with the general population. The possibility of getting value sets based on patients’ self-assessed EQ VAS values and their comparison with value sets from experience-based general population studies will be discussed. Clinical Trial: The study was registered at clinicaltrials.gov, NCT04359628.
Citation
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