This study focussed on the EQ5D. The EQ5D is a tool for measuring the severity of different health states/impairments. Health is measured across 5 dimensions: Mobility, Self-Care, Usual-Activities, Pain/Discomfort, and Anxiety/Depression. A health state is given a score from 1 (no problems) to 5 (extreme problems) on each of these dimensions. Many real-world decision-making bodies use the overall quality of life indicated by this EQ5D measure to perform cost-benefit analyses and compare different treatments.
This study examined how lay people interpret the EQ5D profile of different health states, and how these interpretations change when the disease label is present vs. absent. i.e. when people know what disease is being represented by the EQ5D vs when they do not.
This study focussed on the EQ5D. The EQ5D is a tool for measuring the severity of different health states/impairments. Health is measured across 5 dimensions: Mobility, Self-Care, Usual-Activities, Pain/Discomfort, and Anxiety/Depression. A health state is given a score from 1 (no problems) to 5 (extreme problems) on each of these dimensions. Many real-world decision-making bodies use the overall quality of life indicated by this EQ5D measure to perform cost-benefit analyses and compare different treatments.
This study examined how lay people interpret the EQ5D profile of different health states, and how these interpretations change when the disease label is present vs. absent. i.e. when people know what disease is being represented by the EQ5D vs when they do not.
Participants
A total of 48 participants took part. These were recruited from the participant pool at the University of Warwick. They attended the lab to complete the experiment, and were paid £6 for their participation.
Stimuli and Procedure
The stimuli were 50 different health states, whose EQ5D profile had been measured and reported in previous published studies, or databases. These were presented in a random order, one by one, as shown in figure 1. The screen layout was designed such that subjects could not view values in peripheral vision and would thus be forced to assess dimensions one at a time, shifting their gaze to a different area of the screen to be able to perceive a different dimension’s value. At the bottom of the screen was a slider bar. Subjects used this to indicate how severe they thought the current health state was. This bar was 1000 pixels in length and had two labelled positions: “Best Imaginable Health” at the far left (rating of 0) and “Death” 85% of the way along (rating of 850). This allowed subjects to rate a health state as being worse than death if they wished to. The slider began each trial half way between the two labelled positions. The subject would then move the mouse left and right to move the slider and would click the mouse button to indicate their response.
For the first 25 trials, only the EQ5D information was presented, with no disease name/label. Thus, for trials in this “no_label” condition, subjects could only use the ratings on the 5 dimensions when providing their ratings. In the remaining trials (26 – 50), the disease name/label was presented at the top of the screen in a grey box. Thus, for these trials in the “with_label” condition, subjects could also use any other information or opinions they had about a disease, as well as the information contained within the EQ5D.
Data
The data is saved as csv files. There is one csv file for each participant. Each row is a single trial.
Figure 1. Task screen for a trial where the disease name was given
Supplementary Study
To gather more information about how the disease labels were perceived an additional study was conducted using a different participant sample. This supplementary study was conducted online, with 50 subjects recruited using the prolific academic platform.
The EQ5D was not used or presented at all. Subjects only saw the disease labels. They provided ratings for disease severity, fear of diagnosis, and familiarity. Severity was collected on a similar scale to that of the main experiment, with the two labels in the same relative position of far left, and 85% of the way along. Fear of diagnosis, was the subjects response to the question “How fearful do you think you would feel if diagnosed with this health state/disease?”. These responses were provided on a slider rating scale, from “Not at all fearful” to “extremely fearful”. Familiarity was provided on a 3 point scale: 1 – “I am familiar with this disease”, 2 – “I have heard of this disease but I am not familiar with it”, 3 - “I have not heard of this disease”.
Data
The data for the supplementary study is provided as a single csv file. This contains 50 rows – one for each disease. The columns are the disease names, fear, familiarity, and severity ratings. Note that the rating provided for each of these properties, is the mean rating from the 50 subjects in the online supplementary experiment. Due to quirks of the programs used to collect these ratings, the ratings for fear and severity were recorded on scales with different number ranges: 0 – 100 and 0 – 1000 respectively.
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