scholarly journals 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

10.2196/27669 ◽  
2021 ◽  
Vol 10 (8) ◽  
pp. e27669
Author(s):  
Fitsum Sebsibe Teni ◽  
Ola Rolfson ◽  
Nancy Devlin ◽  
David Parkin ◽  
Emma Nauclér ◽  
...  
Keyword(s):  
General Population ◽  
Data Retrieval ◽  
Health State ◽  
Health States ◽  
National Quality ◽  
Patient Reported ◽  
Patient Groups ◽  
Value Sets ◽  
Eq Vas

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://clinicaltrials.gov/ct2/show/NCT04359628. International Registered Report Identifier (IRRID) DERR1-10.2196/27669

scholarly journals 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 (Preprint)

2021 ◽  
Author(s):  
Fitsum Sebsibe Teni ◽  
Ola Rolfson ◽  
Nancy Devlin ◽  
David Parkin ◽  
Emma Nauclér ◽  
...  
Keyword(s):  
General Population ◽  
Data Retrieval ◽  
Health State ◽  
Health States ◽  
National Quality ◽  
Patient Reported ◽  
Patient Groups ◽  
Value Sets ◽  
Eq Vas

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. CLINICALTRIAL ClinicalTrials.gov NCT04359628; https://clinicaltrials.gov/ct2/show/NCT04359628. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/27669

scholarly journals Longitudinal study of patients’ health-related quality of life using EQ-5D-3L in 11 Swedish National Quality Registers

BMJ Open ◽  
2022 ◽  
Vol 12 (1) ◽  
pp. e048176
Author(s):  
Fitsum Sebsibe Teni ◽  
Ola Rolfson ◽  
Nancy Devlin ◽  
David Parkin ◽  
Emma Nauclér ◽  
...  
Keyword(s):  
General Population ◽  
Secondary Outcome ◽  
Vas Score ◽  
National Quality ◽  
Patient Reported ◽  
Hand Fracture ◽  
Patient Groups ◽  
Vas Scores ◽  
Eq Vas

ObjectiveTo compare problems reported in the five EQ-5D-3L dimensions and EQ VAS scores at baseline and at 1-year follow-up among different patient groups and specific diagnoses in 11 National Quality Registers (NQRs) and to compare these with the general population.DesignLongitudinal, descriptive study.Participants2 66 241 patients from 11 NQRs and 49 169 participants from the general population were included in the study.Primary and secondary outcome measuresProportions of problems reported in the five EQ-5D-3L dimensions, EQ VAS scores of participants’ own health and proportions of participants and mean/median EQ VAS score in the Paretian Classification of Health Change (PCHC) categories.ResultsIn most of the included registers, and the general population, problems with pain/discomfort were the most frequently reported at baseline and at 1-year follow-up. Mean EQ VAS score (SD) ranged from 45.2 (22.4) among disc hernia patients to 88.1 (15.3) in wrist and hand fracture patients at baseline. They ranged from 48.9 (20.9) in pulmonary fibrosis patients to 83.3 (17.4) in wrist and hand fracture patients at follow-up. The improved category of PCHC, improvement in at least one dimension without deterioration in any other, accounted for the highest proportion in several diagnoses, corresponding with highest improvement in mean EQ VAS score.ConclusionsThe study documented self-reported health of several different patient groups using the EQ-5D-3L in comparing with the general population. This demonstrated the important role of patient-reported outcomes in routine clinical care, to assess and follow-up health status and progress within different groups of patients. The EQ-5D-3L descriptive system and EQ VAS have an important role in providing a ‘common denominator’, allowing comparisons across NQRs and specific diagnoses.Trial registration numberClinicalTrials.gov (NCT04359628).

scholarly journals Concordance among Swedish, German, Danish, and UK EQ-5D-3L Value Sets: Analyses of Patient-Reported Outcomes in the Swedish Hip Arthroplasty Register

2021 ◽  
Vol 10 (18) ◽  
pp. 4205
Author(s):  
Fitsum Sebsibe Teni ◽  
Ola Rolfson ◽  
Jenny Berg ◽  
Reiner Leidl ◽  
Kristina Burström
Keyword(s):  
Hip Arthroplasty ◽  
Arthroplasty Register ◽  
Patient Reported ◽  
Before And After ◽  
Value Sets ◽  
Using Data ◽  
Mean Differences ◽  
The Uk ◽  
Eq Vas

Background: Application of different value sets to health-related quality of life (HRQoL) measured with the EQ-5D-3L may lead to different results due to differences in methods, perspectives, and countries used. Focusing on concordance, this study aimed at understanding the implications of applying EQ-5D-3L value sets from Sweden, Germany, Denmark, and the UK to evaluate HRQoL of patients undergoing total hip replacement (THR) in Sweden before and after surgery. Methods: We performed a longitudinal study of patients in the Swedish Hip Arthroplasty Register from preoperative stage to 1-year follow-up (n = 73,523) using data collected from 2008 to 2016. Eight EQ-5D-3L value sets from the four countries were compared based on a valuation method (visual analogue scale (VAS) or time trade-off (TTO)), perspective (experience-based or hypothetical), and country. Concordance among the value sets with patient-reported EQ VAS score was also assessed. Longitudinal changes in EQ-5D-3L index over the 1-year follow-up were compared across value sets by method, perspective, and country. Results: Value sets based on the same method and perspective showed higher concordance in EQ-5D-3L index at both measurement time points than other comparisons. In the comparisons by perspective, VAS value sets showed higher concordance than TTO value sets. The Swedish VAS and the Danish TTO value sets showed the highest levels of concordance with patient-reported EQ VAS scores. Generally, value sets based on the same method and perspective had the smallest mean differences between changes in EQ-5D-3L indices from preoperative to 1-year postoperative follow-up. Conclusion: Among THR patients value sets based on the same method and perspective, a direct transfer of results across countries could be meaningful. In cases of differences in methods and perspectives among value sets, transfer of value sets across settings would have to consider conversion through crosswalk.

scholarly journals Norwegian Population Norms for the EQ-5D-5L: Results From a General Population Survey

2021 ◽  
Author(s):  
Andrew Malcolm Garratt ◽  
Tonya Moen Hansen ◽  
Liv Ariane Augestad ◽  
Kim Rand ◽  
Knut Stavem
Keyword(s):  
General Population ◽  
Age Groups ◽  
Education Level ◽  
Services Research ◽  
Population Norms ◽  
General Decline ◽  
National Quality ◽  
Patient Reported ◽  
Vas Scores ◽  
Eq Vas

Abstract Purpose: To provide the first Norwegian EQ-5D-5L and EQ VAS population norms for the adult general population. Methods: Postal survey of a random sample of 12,790 Norwegians identified through the National Registry of the Norwegian Tax Administration. Norms are shown for the five EQ-5D-5L dimensions, EQ-5D index and EQ VAS scores for seven age categories, males, females and education level. Results: There were 3,200 (25.9%) respondents to 12,263 correctly addressed questionnaires. The EQ-5D-5L dimensions, EQ VAS and background questions were completed by 3,120 (24.6%) respondents. The mean age (SD) was 50.9 (21.7); range 18 to 97 years. The youngest age group of 18-29 years and oldest of 80 years and over had the highest (n=691) and lowest (n=239) number of respondents respectively. Compared to the general population, the respondents comprised a greater number of females, younger and older ages, and had a higher education level. 32% of respondents reported no health problems on the EQ-5D-5L. From the youngest to oldest age groups, there was a general decline in health as assessed by the EQ-5D-5L. The exception was for anxiety/depression, where the youngest age groups had the poorest health. Apart from self-care, women reported poorer health than men, as assessed by the EQ-5D-5L; EQ VAS scores were similar for men and women. Higher levels of health (EQ-5D index, EQ VAS scores) were found with increasing levels of education. Conclusion: The population norms will improve interpretation of EQ-5D-5L and EQ VAS scores in Norwegian applications including clinical practice, clinical and health services research, and national quality registers where EQ-5D-5L is the most widely used patient-reported instrument.

scholarly journals Norwegian population norms for the EQ-5D-5L: results from a general population survey

2021 ◽  
Author(s):  
Andrew Malcolm Garratt ◽  
Tonya Moen Hansen ◽  
Liv Ariane Augestad ◽  
Kim Rand ◽  
Knut Stavem
Keyword(s):  
General Population ◽  
Age Groups ◽  
Education Level ◽  
Population Characteristics ◽  
Population Norms ◽  
General Decline ◽  
National Quality ◽  
Patient Reported ◽  
Vas Scores ◽  
Eq Vas

Abstract Purpose To provide the first Norwegian EQ-5D-5L and EQ VAS population norms for the adult general population. Methods Postal survey of a random sample of 12,790 Norwegians identified through the National Registry of the Norwegian Tax Administration. Norms, weighted for Norwegian general population characteristics, are shown for the five EQ-5D-5L dimensions, EQ-5D index, and EQ VAS scores for seven age categories, females, males, and education level. Results There were 3200 (25.9%) respondents to 12,263 correctly addressed questionnaires. The EQ-5D-5L dimensions, EQ VAS, and background questions were completed by 3120 (24.6%) respondents. The mean age (SD) was 50.9 (21.7) and range was 18–97 years. The youngest age group of 18–29 years and oldest of 80 years and over had the highest (n = 691) and lowest (n = 239) number of respondents, respectively. Compared to the general population, the respondents comprised a greater number of females, younger and older ages, and had a higher education level. 32% of respondents reported no health problems on the EQ-5D-5L. From the youngest to oldest age groups, there was a general decline in health as assessed by the EQ-5D-5L. The exception was for anxiety/depression, where the youngest age groups had the poorest health. Apart from self-care, women reported poorer health than men, as assessed by the EQ-5D-5L; EQ VAS scores were similar for men and women. Higher levels of health (EQ-5D index, EQ VAS scores) were found with increasing levels of education. Conclusion The population norms will improve interpretation of EQ-5D-5L and EQ VAS scores in Norwegian applications including clinical practice, clinical and health services research, and national quality registers where EQ-5D-5L is the most widely used patient-reported instrument.

scholarly journals Statistical Analysis of EQ-5D Profiles: Does the Use of Value Sets Bias Inference?

2010 ◽  
Vol 30 (5) ◽  
pp. 556-565 ◽  
Author(s):  
David Parkin ◽  
Nigel Rice ◽  
Nancy Devlin
Keyword(s):  
Statistical Analysis ◽  
Health Sector ◽  
Health State ◽  
Profile Data ◽  
Patient Reported ◽  
Important Health ◽  
Value Sets ◽  
Single Number ◽  
Eq Vas ◽  
Over Time

Health state profile data, such as those provided by the EQ-5D, are widely collected in clinical trials, population surveys, and a growing range of other important health sector applications. However, these profile data are difficult to summarize to give an overall view of the health of a given population that can be analyzed for differences between groups or within groups over time. A common way of short cutting this problem is to transform profiles into a single number, or index, using sets of weights, often elicited from the general public in the form of values. Are there any problems with this procedure? In this article, the authors demonstrate the underlying effects of the use of value sets as a means of weighting profile data. They show that any set of weights introduces an exogenous source of variance to health profile data. These can distort findings about the significance of changes in health between groups or over time. No set of weights is neutral in its effect. If a summary of patient-reported outcomes is required, it may be better to use an instrument that yields this directly (such as the EQ VAS) along with the descriptive instrument. If this is not possible, researchers should have a clear rationale for their choice of weights and be aware that those weights may exert a nontrivial effect on their analysis. This article focuses on the EQ-5D, but the arguments and their implications for statistical analysis are relevant to all health state descriptive systems.

scholarly journals Implausible States: Prevalence of EQ-5D-5L States in the General Population and Its Effect on Health State Valuation

2020 ◽  
Vol 40 (6) ◽  
pp. 735-745 ◽  
Author(s):  
Ole Marten ◽  
Brendan Mulhern ◽  
Nick Bansback ◽  
Aki Tsuchiya
Keyword(s):  
General Population ◽  
Secondary Data ◽  
Patient Survey ◽  
Health State Valuation ◽  
Health State ◽  
Health States ◽  
Data Set ◽  
Value Sets ◽  
Routine Removal ◽  
The Impact

The EQ-5D is made up of health state dimensions and levels, in which some combinations seem less “plausible” than others. If “implausible” states are used in health state valuation exercises, then respondents may have difficulty imagining them, causing measurement error. There is currently no standard solution: some valuation studies exclude such states, whereas others leave them in. This study aims to address 2 gaps in the literature: 1) to propose an evidence-based set of the least prevalent two-way combinations of EQ-5D-5L dimension levels and 2) to quantify the impact of removing perceived implausible states from valuation designs. For the first aim, we use data from 2 waves of the English General Practitioner Patient Survey ( n = 1,639,453). For the second aim, we remodel a secondary data set of a Discrete Choice Experiment (DCE) with duration that valued EQ-5D-5L and compare across models that drop observations involving different health states: 1) implausible states as defined in the literature, 2) the least prevalent states identified in stage 1, and 3) randomly select states, alongside 4) a model that does not drop any observations. The results indicate that two-way combinations previously thought to be implausible actually exist among the general population; there are other combinations that are rarer, and removing implausible states from an experimental design of a DCE with duration leads to value sets with potentially different characteristics depending on the criterion of implausible states. We advise against the routine removal of implausible states from health state valuation studies.

scholarly journals The Online Elicitation of Personal Utility Functions (OPUF) tool: a new method for valuing health states

2022 ◽  
Vol 7 ◽  
pp. 14
Author(s):  
Paul Schneider ◽  
Ben van Hout ◽  
Marike Heisen ◽  
John Brazier ◽  
Nancy Devlin
Keyword(s):  
Utility Functions ◽  
Health State ◽  
Group Level ◽  
Health States ◽  
Online Tool ◽  
Value Set ◽  
Individual Level ◽  
Personal Utility ◽  
Value Sets ◽  
The Individual

Introduction Standard valuation methods, such as TTO and DCE are inefficient. They require data from hundreds if not thousands of participants to generate value sets. Here, we present the Online elicitation of Personal Utility Functions (OPUF) tool; a new type of online survey for valuing EQ-5D-5L health states using more efficient, compositional elicitation methods, which even allow estimating value sets on the individual level. The aims of this study are to report on the development of the tool, and to test the feasibility of using it to obtain individual-level value sets for the EQ-5D-5L. Methods We applied an iterative design approach to adapt the PUF method, previously developed by Devlin et al., for use as a standalone online tool. Five rounds of qualitative interviews, and one quantitative pre-pilot were conducted to get feedback on the different tasks. After each round, the tool was refined and re-evaluated. The final version was piloted in a sample of 50 participants from the UK. A demo of the EQ-5D-5L OPUF survey is available at: https://eq5d5l.me Results On average, it took participants about seven minutes to complete the OPUF Tool. Based on the responses, we were able to construct a personal EQ-5D-5L value set for each of the 50 participants. These value sets predicted a participants' choices in a discrete choice experiment with an accuracy of 80%. Overall, the results revealed that health state preferences vary considerably on the individual-level. Nevertheless, we were able to estimate a group-level value set for all 50 participants with reasonable precision. Discussion We successfully piloted the OPUF Tool and showed that it can be used to derive a group-level as well as personal value sets for the EQ-5D-5L. Although the development of the online tool is still in an early stage, there are multiple potential avenues for further research.

scholarly journals US population norms for the EQ-5D-5L and comparison of norms from face-to-face and online samples

2020 ◽  
Author(s):  
Ruixuan Jiang ◽  
M. F. Bas Janssen ◽  
A. Simon Pickard
Keyword(s):  
General Population ◽  
Health State ◽  
Sample Mean ◽  
Face To Face ◽  
Population Norms ◽  
The Us ◽  
Patient Health ◽  
The Face ◽  
Anxiety Depression ◽  
Eq Vas

Abstract Purpose Normative scores (norms) allow for comparisons between population(s) of interest and the general population, which is useful for burden of disease studies and cost-effectiveness analysis. The primary aim of this study was to estimate US visual analogue scale (EQ VAS) and utility-based norms for the EQ-5D-5L using the face-to-face sample. The secondary aim was to compare norms estimated in the face-to-face and online populations. Methods This study estimated population norms from two general population surveys: (a) face-to-face and (b) online. In these surveys, respondents provided their health state using the EQ-5D-5L health classifier and the EQ VAS. Descriptive statistics, including mean, standard deviation (SD), 95% confidence interval, and median for the 5L utility and EQ VAS were estimated for each sample and across relevant respondent characteristics to serve as the basis for US EQ-5D-5L norms Results Face-to-face sample respondents (n = 1134) were representative of the US adult general population. In this sample, mean (SD) utility decreased with increasing age until age 45 or greater (age 45–54: 0.816 (0.249) age 55–64: 0.815 (0.243) age 65–74: 0.824 (0.217) age 75 + : 0.811 (0.218)). With increasing age, more problems were reported on all dimensions except anxiety/depression; a smaller proportion of respondents age 65 and older reported problems with anxiety/depression (23.8%) as compared to the youngest respondents (42.1%). Online (n = 2018) mean utility and EQ VAS values were consistently lower than the face-to-face sample. Conclusions The availability of US EQ-5D-5L norms facilitates interpretation and understanding of general population and patient health.

HSR19-107: Nivolumab for Newly Diagnosed Classical Hodgkin Lymphoma: Patient-Reported Outcomes From CheckMate 205 Cohort D

2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-107
Author(s):  
Radhakrishnan Ramchandren ◽  
Stephen M. Ansell ◽  
Philippe Armand ◽  
Andreas Engert ◽  
Fiona Taylor ◽  
...  
Keyword(s):  
Hodgkin Lymphoma ◽  
Self Care ◽  
Newly Diagnosed ◽  
Classical Hodgkin Lymphoma ◽  
Meaningful Improvement ◽  
Patient Reported ◽  
Vas Scores ◽  
Care Activity ◽  
Eq Vas

Background: Patients (pts) with classical Hodgkin lymphoma (cHL) frequently experience reduced health-related quality of life (HRQoL) (Oerlemans et al, Ann Hematol 2011). Nivolumab, a fully human IgG4 anti-programmed death-1 (PD-1) immune checkpoint inhibitor monoclonal antibody, demonstrated efficacy and clinically meaningful improvement in pt-reported outcomes (PROs) in pts with relapsed/refractory cHL in cohorts A, B, and C of CheckMate 205 (NCT02181738) (Armand et al, J Clin Oncol 2018; Engert et al, ASH 2017). Nivolumab monotherapy followed by nivolumab + doxorubicin, vinblastine and dacarbazine (N-AVD) demonstrated an objective response rate of 84% in newly diagnosed cHL (cohort D of CheckMate 205; Ramchandren et al, EHA 2018). We present PROs in CheckMate 205 cohort D. Methods: Pts ≥18 years of age with untreated, advanced-stage cHL, with ECOG performance status (PS) of 0–1 received 4 doses of nivolumab monotherapy (240 mg IV Q2W) followed by N-AVD for 6 cycles (12 doses). Pts then entered the follow-up (FU) period. PROs were an exploratory endpoint, assessed using the EuroQol 5 Dimensions-3 level (EQ-5D-3L) and associated visual analog scale (EQ-VAS) in all treated pts who had both a baseline (monotherapy cycle 1) and post-baseline assessment. EQ-VAS ranges from 0–100, with higher scores indicating better HRQoL. In EQ-5D-3L, pts can report no, some, or extreme problems in each of 5 dimensions (mobility, self-care, activity, pain, and anxiety). Results: 51 pts were treated. At baseline, median age was 37 years, 63% were male, 59% had ECOG PS of 0. 49 pts (96%) completed baseline EQ-VAS. Mean EQ-VAS scores exceeded the mean baseline score at the end of monotherapy, after 2 combination cycles, at the end of therapy, and during follow-up (Table 1). The proportion of pts reporting some or extreme problems in EQ-5D-3L was numerically lower than or similar to baseline after monotherapy for all dimensions, but was numerically higher than baseline (dimensions of mobility and activity) after 2 combination cycles, and remained close to or numerically below baseline during follow-up (dimensions of self-care, activity, pain, and anxiety). Conclusions: Pt-reported HRQoL, as assessed by observed mean EQ-VAS scores, did not deteriorate from baseline during treatment with nivolumab followed by N-AVD. Proportions of pts reporting problems in individual EQ-5D-3L dimensions were generally similar to baseline during treatment and follow-up.

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