Collection of patient reported outcomes typically occur in three ways: interviews, self-administration or a combination of both (Desphande et al., 2011). As the general population becomes ever more tech-savvy, researchers are moving towards electronic administration of PROs to collect patient outcomes data. The use of electronic PROs can be more beneficial than paper based PROs as they reduce data entry errors, allow for notifications to be sent to the patient and may be viewed as more convenient than other methods, thus increasing the likelihood of patient participation.
Sharing our Canadian experience with PROMs at the 2013 National PROMs Summit in London, England
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.
Reflections on the 2013 Canadian Association for Health Services and Policy Research conference
The Canadian Association for Health Services and Policy Research held their annual conference in Vancouver from May 28 to 31, 2013. The conference was well attended by the Health Care Funding team, and we gave a presentation about our evaluation of the effects of introducing activity-based funding in BC and a poster about linking costs of care across different parts of the health system.
- Presentation: Collecting Patient-Reported Outcomes in a Large Canadian Health Region Chan A, Crump T, Sutherland J, Wright J.
- Poster: Selecting a Generic Health Status Instrument for the Systematic Collection of Patient-Reported Outcomes in Elective Surgery. Crump T, Chan A, Sutherland J.
We appreciated the chance to present our work and to receive feedback, and we were impressed by the breadth and quality of the conference plenary and breakout sessions. Our team of researchers, data analysts, and students liked the theme of the conference, Making Good on the Triple Aim. The following are some of our comments:
Measuring the Patient’s View of the Queue: Challenges and Strategies for Collecting Patient Reported Outcomes Data for Waitlisted Surgical Patients
Vancouver Coastal Health, in collaboration with the University of British Columbia, is collecting Patient Reported Outcomes (PROs) to quantify the effects of waiting for surgical care. General and condition-specific health status, pain, and depression are being measured at three points during the patient’s episode of care: 1) upon registration to a surgical wait list, 2) prior to surgery, and 3) post-recovery. These repeated measurements allow us to evaluate the impact of wait time on the patient’s health while they wait for surgery and after treatment. The results may have administrative and clinical applications, including the management of waitlists and operating room resources.
Learn more about PROMs
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.
Measuring health related quality of life
Measuring the health-related quality-of-life (HRQoL) of a population is a concept that has been around since the late 1940s. This is when the World Health Organization proposed that health be measured, not simply by the absence of disease, but by the quality of one’s life. This is great in theory, but the reality is that quality-of-life can be a difficult thing to quantify. How do we measure gains or losses in HRQoL?
As one answer to this, Fryback (2010) presents the Data Pyramid for Population Health in a paper he authored in 2010 (see figure 1). The pyramid has four levels. On the first level of the pyramid, the base, are the crude health indicators and vital statistics, such as a population’s death, immunization, and malnutrition rates.
Figure 1: Data Pyramid for Population Health
The three levels above this move away from indicators into more direct measures of HRQoL. The second and third levels conceptually define and operationalize measures of HRQoL, including domains of physical, psychological, and social health. The final level uses these direct measures to scale and index HRQoL.
RESIO
The RESIO study was undertaken to test the feasibility of collecting PROMs on a routine basis. From November 1999 to September 2000, 5,313 consecutive patients having cataract replacement surgery, cholecystectomy, hysterectomy, lumbar discectomy, prostatectomy, or total hip replacement completed a pre- and post-surgery survey of their health related quality of life (HRQOL).
Wright CJ, Chambers GK, Robens-Paradise Y. Evaluation of indications for and outcomes of elective surgery. CMAJ: Canadian Medical Association journal. Canadian Medical Association; 2002 Sep 3;167(5):461–6.
Welcome to the PROMs Community
Patient-centred care seems like such a hot topic right now. I don’t know, maybe my radar is just extra sensitive to this stuff, but over the last couple of years it seems to have grown into an avalanche of interest. Everywhere I turn there’s a new theme journal, a new initiative or policy, new money, all aimed and moving patient-centred care forward.
A lot of this interest seems targeted at collecting, measuring, and reporting outcomes from the patient’s perspective. This envelops everything from patient education and engagement, to involving the patient in the clinical decision making process, to having them report their health status. There is an enormous effort right now to quantify health care from the patient’s point of view.
VALHUE
Vancouver Coastal Health – Value and Limitations in Hospital Utilization and Expenditure (VALHUE) Project Summary
Significance and Policy Context
There is little understanding of whether shorter wait times are associated with better clinical outcomes, and whether policy-linked initiatives to increase access to surgery are associated with consistent changes in health improvement. The literature regarding the effect of wait times on health is significantly under-developed. VALHUE aims to address this gap in the literature.
This study is intended to inform clinicians, VCH decision makers, and policymakers about the nature of relationships between wait times and trajectory of change in health status, pain and depression. We expect that the results will be immediately relevant in BC and other provinces implementing changes to prioritizing health expenditures. This study is the first in Canada to examine the trajectory of patients’ health while on the wait list, and also to differentiate the impact of surgical care by different types of conditions.