Patient-reported outcomes provide health care providers and researchers with important information about patients’ perspectives on the effectiveness of health care interventions and services.
The patient-reported outcomes (PRO) program focuses on the validation and utilization of person-centered measurement instruments (e.g., questionnaires delivered in paper form, online, or via a handheld device) by which people report on their perceived health outcomes, including their quality of life, symptoms, daily functioning, and aspects of physical, psychological, social, and spiritual well-being.
Program Head: Dr. Rick Sawatzky
There is growing interest in the use of PROs in the Canadian health care system to support person-centered care, practice improvement, and policy development.
PRO research at CHÉOS focuses on statistical methods for PROs, the use of PROs in clinical practice, the development and validation of PRO measurement instruments, and reviews regarding the selection and utilization of PROs.
The primary research and methodology areas our patient-reported outcomes program undertakes are:
The overall aim of this research is to develop and implement statistical methods that will contribute to valid, reliable, and comparable patient-reported outcomes data for decision-making. Specific topics include:
- Validity of PRO measures in heterogeneous populations
- Methods for response shift detection and accommodation
- Response shift and disease activity in inflammatory bowel disease (Publication Link)
- Minimal evidence of response in the absence of a catalyst (Publication Link)
- Guidelines for secondary analysis in search of response shift (Publication Link)
- Relative importance measures for reprioritization response shift (Publication Link)
- Response shift: A review of the literature (Archived Webinar)
- Computerized adaptive testing
- The accuracy of computerized adaptive testing in heterogeneous populations (Publication Link)
- Symptom profiles
- Symptom distress profile in hospitalized patients in Sweden: A cross-sectional study (Publication Link)
- Deriving and measuring quality-adjusted life years
- Use of a Quality-of-life and Practice Support System (QPSS) in home care services for older adults (Archived Webinar)
- The use of electronic QoL assessments to negotiate shared understandings of care (In Progress)
Older adults with advancing and life-limiting illnesses often have complex issues affecting their ability to function and overall quality of life (QoL). As such, a routine assessment of their health care needs and QoL is needed to ensure they are receiving the best care possible. These assessments typically include questions about the patient’s symptoms, well-being, and their experience with the care they are receiving. This information can not only improve the quality of care for by the patient, but also lessen the burden on the health care system and its providers.
Dr. Rick Sawatzky’s research investigates the use of self-reported, tablet-based QoL assessments for older adults with life-threatening illnesses in a homecare setting. Handheld electronic instruments eliminate the hassle of paper forms, and can serve as an efficient way for patients and family caregivers to make their concerns visible to health care providers. Dr. Sawatzky’s research seeks to answer two key questions: how to best integrate electronic QoL assessment for older adults in palliative homecare; and whether the routine use of these instruments improves the quality of care they receive.
This study will provide a much-needed homecare perspective to existing research in a hospital setting, and is part of a larger research initiative on the implementation of a tablet-based QoL Assessment and Practice Support System (QPSS). The results of this study will provide insight into the use of electronic QoL assessments in palliative homecare nursing, with the ultimate goal of improving care for older adults with serious, life-limiting illnesses as well as their family caregivers.
Funding is provided by the Technology Evaluation in the Elderly Network.
- Development and validation of a patient-reported measure of compassionate care (In Progress)
- Adaptation of the Veterans Rand 12-item instrument for use in residential care (In Progress)
- Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised (Publication Link)
- Psychometric evaluation of two appetite questionnaires in patients with heart failure (Publication Link)
The QoLHHI Inventory is a tool that helps to measure subjective quality-of-life (QoL) in homeless or vulnerably housed individuals. Created by CHÉOS Scientists Drs. Anita Palepu, Anne Gadermann, and UBC Professor Dr. Anita Hubley, the QoLHHI is interview-based and is a comprehensive measure of QoL, and is available for researchers to use free-of-charge for research, service provision, and program evaluation purposes.
Findings from recent use of the Inventory, Content validation of a quality-of-life measure for individuals who are homeless and vulnerably housed, were presented at the 22nd Annual Conference for the International Society for Quality of Life Research (ISOQOL) in Vancouver, BC, in October 2015.
Please visit the QoLHHI Inventory website for more details.
- Patient- and family-reported experience and outcome measures across transitions of care for frail seniors living at home (In Progress)
- Patient- and family-reported experience and outcome measures for use in acute care (Publication Link) (Archived Webinar)
- Patient-reported outcome measures for use in primary and community care (Publication Link) (Archived Webinar)
- PROMs Background Document, Canadian Institute for Health Information (Publication Link)