I am considering using the EQ-5D-5L instrument (https://euroqol.org/wp-content/uploads/2016/09/EQ-5D-5L_UserGuide_2015.pdf) in people with spinal cord injury. The mobility item of the scale asks about the ability of the person to "walk about". Would anybody know if there is an adapted version for people using a wheelchair? Something that would potentially use the word "mobiling" or "moving from A to B" instead of "walking about"?
I would appreciate any guidance on this.
Anestis
Hi Anestis.
One of the valuable features of the EQ-5D-5L is the ability to deliver it in a standardized manner to enable comparison of data between trials and even between populations and disease indications. Because of this I think it's really unlikely that EuroQoL would agree to a change in the wording to the mobility item, although the current wording won't work well for your patient group.
I think it may be more relevant to go back to the concepts of interest in your study, and select a patient-reported outcome measure (PROM), or set of PROMs, that address these. By considering what aspects of quality of life and activities of daily living are important and meaningful to patients suffering from spinal cord injury, you may be able to select the optimal PROMs to use.
A possible alternative instrument you might be able to consider dependent on your study objective could be, for example, the SCI-QOL (https://qolty.com/sci-qol/) which I believe also has a short form, and is designed specifically to assess QoL in spinal cord injury patients. There are a number of journal articles that describe the validation work that are referenced on the web page above.
Hope this helps - Bill
Thank you Bill Byrom!
I was hoping to be able to use EQ-5D in order to calculate QALYs and explore cost-effectiveness of an intervention. My understanding is the SCI-QOL does not allow this type of calculations. Is that right?
Hi Anestis.
I suspect you are right. To provide an index for QALYs, the scale really needs to be able to measure perfect health in addition to reduced health status. The generic QoL scales do that, but you’re right that a disease-specific scale may not as it‘s designed with a reduced health status in mind.
In your context, to estimate QALYs, you might argue that you should keep the wording as it is even though all patients would rate their ability to.walk in the bottom or a lower category for that item.
Best regards
Bill
Hi Anestis
An alternative instrument you might consider for generating a QALY is the ICECAP-A. This instrument frames QOL in a broader sense than the EQ5D. The questions should be suitable for individuals with SCI. Check out the University of Birmingham's website for further info:
https://www.birmingham.ac.uk/research/activity/mds/projects/HaPS/HE/ICECAP/ICECAP-A/index.aspx
regards. mark
Thank you Mark Q. Thompson! I will have a closer look at ICECAP-A. Regards!
Anestis
Unfortunately, the Euroqol group does not developed a generic instrument for people with disabilities. The available tools are for the young (EQ - 5D - 3L/5L - Y) and the adult EQ - 5D - 3L/5L). What I suggest is to employ the generic instrument EQ - 5D and select a condition specific instrument for the particular case. The generic will grasp aspects which are typically omitted by the condition specific tool, and it allows to compare QALYs with other published articles. The condition specific will have an advantage of sensitive to change i.e responsiveness. I suggest you to look at this link from the University of Oxford, which has different instruments based on conditions (phi.uhce.ox.ac.uk/ ).
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