The Second National PROMs Summit focusing on the Development of PROMs in Clinical Practice at a Local Level was held on November 14th, 2013 in London, England. The conference was attended by Angie Chan, Project Manager, on behalf of the VALHUE study team. Our presentation about the Canadian experience of selecting instruments for the systematic collection of PROMs garnered interest among the mostly UK-based attendees. The UK has considerable experience with PROMs use and development, and we appreciated the chance to present our work and receive feedback from leaders in the field.
- Presentation: Selecting generic and condition-specific health status instruments for the systematic collection of patient-reported outcomes across a large, urban, Canadian health authority Chan A, Sutherland, J.
The full abstract is listed below.
Objective: Elective surgery patients can experience relatively long wait times for treatment in British Columbia, Canada. Healthcare decision-makers in BC are concerned about the changes in patients’ health while they wait for surgery. We established a comprehensive survey of community-based patients in a large urban area in order to understand how patients’ health status changes while waiting for elective surgery. The objective of this presentation is to describe the process and results of selecting generic and condition-specific health status PROMs instruments for 7 clinical sub-specialties.
Approach: We established the following criteria for assessing the appropriateness of generic and condition-specific PROMs for policy and program evaluation: 1) ability to rank order health states, 2) perceived respondent burden, 3) affordability, 4) applicability to the Canadian population, and 5) use in similar applications. We examined peer-reviewed and grey literature to identify the most commonly used generic and condition-specific PROMs instruments and their applications. Where applicable, we referred to the websites for each of the instruments for current cost information and Canadian applicability.
Results: PROMs instruments for general health status were widely reported in the literature. We identified three commonly used preference-based instruments: the EuroQoL EQ-5D, Health Utilities Index 3 (HUI3), and the Quality of Well-Being Scale (QWB). The EQ-5D had the fewest questions and was the only instrument that did not have a licensing fee associated with its paper-based use. Both the EQ-5D and the HUI3 had established health state values using a Canadian sample. All of the instruments had been used in a number of different jurisdictions, though the standard QWB was not intended for mail-based surveys.
We found limited condition-specific PROMs that satisfied all 5 selection criteria. Therefore, for many conditions, we chose instruments that fit at least 3 out of 5 criteria and consulted surgeons with PROMs experience. Across the range of surgery types, we chose 22 condition-specific instruments. For surgeries where an appropriate condition-specific instrument was not found, only the generic instrument was administered.
Conclusion: PROMs instruments for general health status were well reported and easily assessed based on our selection criteria. We ultimately selected the EuroQoL EQ-5D, which performed well on all five criteria. Conversely, condition-specific PROMs instruments were more challenging to assess and some of our 22 condition-specific instruments were chosen as the best available, but not necessarily the best fit. This poses a challenge for healthcare decision-makers looking to use PROMs for intra-condition evaluations to inform their policy decisions. Further research is needed into condition-specific instruments if PROMs are to be incorporated into policymaking on a broad scale.