The VALHUE study team will be showing off our research at the Canadian Association for Health Services and Policy Research‘s (CAHSPR) annual conference in Vancouver on May 28 – 31, 2013. Our poster presentation is about selecting a generic health status instrument for the systematic collection of patient-reported outcomes and our oral presentation will focus on lessons from the collection of patient-reported outcomes and knowledge translation exercises. The full abstracts are listed below.
Poster Presentation
Title: Selecting a generic health status instrument for the systematic collection of patient-reported outcomes
Objectives: A large, longitudinal mail survey of community-based patients undergoing elective surgery was established to measure the impact of that care on patient-reported outcomes (using a pre- and post-surgery study design). The objective of this analysis was to ascertain which of the commonly used generic health status instruments to adopt.
Approach: We established a set of criteria with which the generic health status instruments were evaluated. These included: 1) type of instrument and ability to rank order health states (psychometric- versus preference-based), 2) perceived responder burden (number of questions), 3) affordability (licensing fees), 4) Canadian applicability (generalizability to Canadian population), 5) use in similar applications and international comparability. The peer-reviewed and grey literature-bases were scanned to identify the most commonly used generic health status instruments and any review of their application. The websites for each of the instruments were reviewed to extract the most current information regarding costs and Canadian applicability.
Results: At the outset, it was determined that a preference-based instrument – able to rank order health states – would best meet the analytic needs of our survey, we narrowed or search of the literature accordingly. Three commonly used preference-based instruments were identified: the EuroQoL EQ-5D, Health Utilities Index 3 (HUI3), and the Quality of Well-Being Scale (QWB). With five questions, the EQ-5D had the fewest questions of the three instruments. The EQ-5D 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.
Conclusion: Based on our criteria, the EQ-5D best satisfied the needs of our survey of surgical patients. Not only did it present the lowest responder burden, but it also was the most affordable. Its Canadian-based population norms and use in similar large-scale mail survey of community-based patients were also favourable.
Oral Presentation
Title: Collecting patient-reported outcomes in a large Canadian health region: An integrated Knowledge Translation exercise
Objectives: Patient-reported outcome measures (PROMs) are increasingly popular for assessing the effectiveness of health care policies and the impact of care. The objective of this project is to report on the development of a process for systematically collecting PROMs for patients undergoing select elective surgery with Vancouver Coastal Health (VCH).
Approach: We engaged the VCH early in the research process. Together, we translated the PROMs literature from other jurisdictions to the VCH context and developed appropriate data collection methods for the health region, including the selection of PROMs instruments. We then addressed the privacy and informed consent challenges that PROMS collection entails. Our VCH partners introduced us to key stakeholders, including hospital administrators, the regional surgical executive committee, and individual surgeons. Collectively, we developed the process for identifying potential participants. Ongoing modes of communications were established to provide all stakeholders with regular project updates on PROMs implementation, data collection and interpretation.
Results: The diverse stakeholders involved in this project required considerable relationship building. Meetings and communications were required with ethics review boards, VCH Decision Support, hospital and surgical working groups, and individual surgeons. This effort resulted in the largest systematic collection of PROMs currently underway in Canada. PROMs are now collected from participants undergoing one of 124 different elective surgeries. This involves 6 of 9 VCH surgical hospitals and 30 surgeons from a range of subspecialties. PROMs are collected at three different points during the participant’s episode of care: 1) at the time of registration on the surgical wait list, 2) prior to surgery, and 3) post-recovery. Stakeholders are provided with regular updates and opportunities to collaborate, which seem to assist in surgeon recruitment and meaningful engagement.
Conclusion: The systematic and rigorous collection of PROMs for patients undergoing elective surgeries is possible in a regional health authority. However, it is unlikely that this would have been successful were it not for closely integrating the health authority early in the process and building productive relationships with key stakeholders.