There are literally thousands of survey tools out there designed to allow patients to self-report on their own health outcomes. Their names don’t roll off the tongue – consider PROMIS-29, CAW, AQOL-4D, EORTC QLCC-30 … It’s pretty clear that these names originated from the academic community, not from marketing. That said, there was a healthy dose of dark humour shown by Washington University when they named their sino-nasal survey tool “SNOT-22”.
As a health provider who wants to measure and improve health outcomes for their patients, how do you find the right survey tool?
It’s not always that easy. Patient Reported Outcome Meausure (PROMs) tools are a niche area and the survey owners are often within smaller academic bodies with little budget for self-promotion. Cemplicity work with a couple of consolidation efforts such as ICHOM who have introduced disease specific standard sets, but this approach certainly doesn’t suit every clinical setting.
A good place to start is to consider the objectives of your PROMs programme against the survey tools being considered. Are you trying to measure detailed outcomes of a specific procedure or could you use a generic tool to look more broadly at outcomes across a specialty or entire organisation?
EQ-5D Quality of Life Survey
One of the most common generic tools used is the EQ-5D quality of life survey developed by Euroqol. Euroqol is really a collective, based out of The Netherlands, but made up of an international network of ninety multidisciplinary researchers. Their EQ-5D tools are well established as one of the best quality of life, non-disease specific tools available. It’s also available in more than 130 languages (more than any other tool).
The tool itself is made up of two parts – the first being a descriptive system of five dimensions: Mobility, Self-care, Usual activities, Pain/discomfort and anxiety/depression. All with the same answer options which enables nice comparability and scoring.
The second part uses a visual analogue scale of “VAS” of 0-100. The endpoints are labelled ‘The best health you can imagine’ and ‘The worst health you can imagine’ which enables a quantitative measure of overall health outcome from the patient’s own perspective. This is a particularly powerful metric to track outcomes over time.
At Cemplicity, we have asked thousands of patients the EQ-5D-5L question set . We find patients respond well to the tool, it’s one of the shorter tools out there, and because of it’s broad applicability it creates some very powerful, system-level analytics across multiple specialities. We find it interesting how different dimensions respond to different patient cohorts and clinical pathways – refer to our Southern Cross Health Society case study here.
However, as with most PROMs tools, we have had to add opportunities for patient comments which we think brings the quantitative feedback ‘alive’. Still, when you are thinking about a generic quality of life tool, it’s a pretty good start.