APERSU Newsletter -- Volume 3, Issue 2
Winter 2018

Report from Co-Directors

We are pleased to update you on recent activities of the Alberta PROMs and EQ-5D Research and Support Unit (APERSU) Team.

The APERSU Team had quite a bit of travel this fall related to our research program; first to Lisbon in September for the annual EuroQol Plenary meeting and to Dublin for the ISOQOL 25th Annual Conference in October and ISPOR Europe in Barcelona in November.

We held our 4th Annual APERSU End-User Meeting on October 11 and 12, 2018, at the Varsona Hotel in Edmonton. We had a good turn out for the meeting and many fantastic presentations detailed further in this newsletter. One highlight of the meeting was the PCN Panel discussion. The presentation included a summary of the APERSU PCN Assessment, describing the current context for EQ-5D use in primary care, followed by implementation stories from Mosaic, Edmonton Oliver and Palliser PCNs. To listen to the taped session, please visit https://apersu.ca/news/annualmeetings/. We appreciate everyone taking time in their busy schedules to attend the meeting and special thanks to all that presented. See the article below for more information on the meeting.

As part of the 4th Annual APERSU End-User Meeting, we held meetings for our Board of Directors and Scientific Advisory Committee, which were very constructive and valuable for the APERSU Team. We are very fortunate to have these two entities to guide us strategically in terms of our services and with our research agenda as we move forward.

We are looking ahead to the 5th Annual APERSU End-User Meeting, which will be held on October 17 and 18, 2019 at the Coast Canmore Hotel and Conference Centre in Canmore, Alberta. Please hold these dates in your calendars.

We will begin looking for graduate summer students in the New Year, please let us know if you are interested or if you have a student you think would be interested in assisting with APERSU projects over the summer of 2019.

On behalf of the APERSU Team, I would like to take this opportunity to wish all of you a very Merry Christmas and all the best in the year ahead. We will update you on APERSU’s activities next summer.

You can unsubscribe from this newsletter by emailing us at apersu@ualberta.ca.

4th Annual APERSU End-User Meeting

APERSU held its 4th Annual End-User Meeting on October 11 and 12, 2018, at the Varscona Hotel on Whyte in Edmonton. We hosted delegates from across Canada, United States, the Netherlands, Sweden, and the United Kingdom. We were very fortunate to have had fairly mild weather for our meeting.

We would like to thank all of our presenters:

• Arto Ohinmaa (APERSU): Overview and Update on APERSU
• Jeff Johnson (APERSU): Health System Level Implementation of PROMs: The EMPATHY Trial
• Linda Watson (CancerControl Alberta): CancerControl Alberta’s Patient Reported Outcomes Program: Striving to make PROs Meaningful
• Nicole de Guia (Canadian Institute for Health Information [CIHI]): Advancing PREMs and PROMs across Canada and Beyond – A CIHI update
• Bas Janssen (EuroQol Research Foundation, Erasmus University), Emelie Heintz (QRC Stockholm Research Unit, Karolinska Institute), Seher Korkmaz (Stockholm County Council): Large scale application of EQ-5D in Swedish National Quality Registers
• Stephanie Keeling (University of Alberta): Incorporating patient-reported outcomes into rheumatology registries: RAPPORT and ONTRAAC registry experience
• Markus Lahtinen and Roland Simon (Health Quality Council of Alberta [HQCA]): The EQ-5D at the HQCA; From here to beyond
• Lisa Warner and Katie Churchill (Alberta Health Services): Enabling Function for Meaningful Living: Our Journey Implementing the EQ5D-5L in Community Rehabilitation
• Hena Qureshi (AmerisourceBergen Innomar Strategies and KannaVovle): The Impact of Medical Cannabis in Cancer Patients

PCN Panel Discussion:
• Allison Soprovich (APERSU): What’s the value of the EQ-5D in the Primary Care Networks?
• Peter Rymkiewicz (Mosaic Primary Care Network): Mosaic PCN: Systems Integration Supporting the Patient Medical Home and Evidence Based Care
• Alvin Yapp (Edmonton Oliver Primary Care Network): Edmonton Oliver PCN: Integrating EQ-5D into EMRs
• Shea Wilks and Abbie Skrove (Palliser Primary Care Network): Integrating the EQ-5D into the provider workflow

Research Trainee Presentations:
• Xuejing (Jennifer) Jin (APERSU): Responsiveness and minimally important difference of the EQ-5D-5L and EQ-5D-3L in patients following total hip or knee replacement
• Maryna Derkach (APERSU): Comparative performance of the EuroQol EQ-5D-5L and the CDC Healthy Days measures in assessing population health

We would like to thank all attendees.

The two-day meeting included a Board of Directors meeting and a Scientific Advisory Committee meeting (both of these were for members only). We had a guest from the EuroQol Foundation sit in on our Scientific Advisory Committee Meeting, Bas Janssen. We would like to thank the members of both the Board of Directors and the Scientific Advisory Committee for their service and advice to the APERSU Team.

EMPATHY Trial Update

The Northern Alberta Renal Program (NARP) has begun implementing the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) Trial as of September 17, 2018. While sites continue to implement the trial over the next 12 months, we will continue to provide support and ongoing education as needed. One nurse at each site will serve as EMPATHY site lead, acting as a champion for the trial and a liaison between the site and the research team to ensure sites are well equipped to carry out the trial. We will also been implementing a qualitative sub-study to evaluate the EMPATHY interventions in the New Year. We were successful in applying for funds from the EuroQol Research Foundation for the qualitative study, where clinicians and patients will be interviewed to explore the effects and value of PROMs in the clinical management of hemodialysis patients.

The Southern Alberta Renal Program (SARP) initially piloted one arm of the EMPATHY intervention in October, in order to test their electronic data collection tool. Some technical and implementation issues were experienced as the project began to role out, so SARP is working to troubleshoot these issues and then re-initiate the pilot again in December 2018. The remaining units will be rolled out in the New Year in a phased approach.

The third version of EMPATHY will be rolled out by the Ontario Renal Network (ORN), who are planning for implementation in Spring 2019. Sixteen hemodialysis sites have been recruited for the randomization. Due to various charting differences from site to site, clinical workflows will be developed at each site. The ORN is planning for patient and provider education and training early in the New Year.

APERSU PCN Assessment

As you may know, Alberta Health Services and Alberta Health have both endorsed the use of the EQ-5D as a generic PROM, which has been increasingly used in primary care networks (PCNs). The APERSU PCN Assessment project explored how PCNs are currently using the EQ-5D. We visited and interviewed 19 PCNs to discuss why and how they use the EQ-5D, what they do with the data and results, and whether its use has influenced patient management or decision-making within the PCN.

Overall, most PCNs find the EQ-5D easy to use and to administer to patients.
• 79% use the EQ-5D for program evaluation purposes
• 87% administer the EQ-5D by paper or laminated paper

Challenges with the use of PROMS that were identified include:
• Integrating into existing workflow
• Clinician engagement
• EMR/infrastructure

The foundation for successful implementation is influenced by:
• Effective communication and training with clinicians
• Pilot testing before rolling it out across all PCN clinics and patients

Our next steps include:
• Conduct in-person consultation visits to meet individual PCN needs
• Establish a PCN working group to help shape APERSU activities in supporting PCNs
• Facilitate learning and communication among PCNs
• Increase support for data analysis and visualization
• Create a tool kit with resources to implement, analyze and report EQ-5D use

For more information on this project – please email Allison Soprovich, allison.soprovich@ualberta.ca

CancerControl Alberta Patient Reported Outcomes Symposium: Going “PRO” in Alberta

November 22-23, 2018, Blackfoot Hotel, Calgary, AB

CancerControl Alberta (CCA) held a 2-day symposium on Nov 22-23, 2018, on patient-reported outcomes (PROs) to: 1) enhance the understanding of the impact and relevance of collecting and using PROs in cancer care; 2) discuss experiences and lessons learned by cancer care agencies in other provinces that have implemented PROs in cancer care; and 3) to highlight current work and future direction to be taken by CCA in implementing and using PROs in cancer care.

The first day of the symposium started by a series of presentations on the use of PROs in cancer care across different provinces including British Columbia, Ontario and Quebec. On the second day, 13 speakers presented on topics ranging from using PROs in clinical care, to selecting and using disease/tumor specific PROs, as well as digital PRO tools including Connect Care. These presentations were followed by a series of four workshops that aimed to develop hands-on experience with various aspects and applications of PROs.

Fatima Al Sayah (APERSU’s Research Manager) and three other speakers participated in one of the moderated panels during the plenary sessions titled “PROs Across the Cancer Continuum: What Do We Measure and When?” chaired by Dr. Linda Watson. Fatima presented on the use of PROs data using the EQ-5D instrument as an example: 1) at the individual patient level for screening and monitoring purposes, and enhancing shared decision making to improve clinical patient management; and 2) at the system level for quality improvement purposes through monitoring and evaluation of outcomes, and in assessing value for money. Further, Fatima briefly highlighted the application of a specific type of PROs, namely preference-based health status measures, in economic applications, particularly for calculating quality-adjusted life years (QALYs).

CancerControl Alberta is a leader in the use of PROs as a routine outcome measure in cancer care in Canada. There are ongoing efforts to streamline and enhance the use of PROs in this patient group in Alberta and across the country. The use of digital PRO tools seem to be one of the key facilitators for the successful application of PROs, in addition to demonstrating clinical utility of PROs in improving patient care.

APERSU continues to work with CCA and other end-users of EQ-5D and PROs in Alberta to support the implementation of these tools in various clinical areas, and to enhance the use of data within the healthcare system.

APERSU Publications

Short H, Al Sayah F, Ohinmaa A, Lahtinen M, Johnson JA. The relationship of neighbourhood-level material and social deprivation with health-related quality of life. Qual Life Res 2018;27:3265-3274. PMID: 30069793.

APERSU Presentations

McClure NS. Thokala P et al. Cost-Effectiveness Thresholds: the Past, the Present and the Future. Paper Discussion at the Network of Alberta Health Economists-Health Economics and Outcomes Research Student-led Seminar Series, Edmonton, AB, September 25, 2018.

Johnson JA. Applying HRQL measures in clinical practice. 17th Annual Fall Symposium Canadian Cardiovascular Pharmacist Network. Edmonton AB, September 29, 2018.

Jin X, Al Sayah F, Ohinmaa A, Marshall D, Johnson JA. EQ-5D-5L vs. EQ-5D-3L: A cross-sectional comparison of measurement properties among total hip and knee replacement patients. ISOQOL 25th Annual Conference, 24-27 October, 2018, Dublin. Quality of Life Research 2018; 27 (Suppl.): 1027:s61.

Jin X, Al Sayah F, Ohinmaa A, Marshall D, Johnson JA. Responsiveness of the EQ-5D-5L and EQ-5D-3L in patients following total hip or knee replacement. ISOQOL 25th Annual Conference, 24-27 October, 2018, Dublin. Quality of Life Research 2018; 27 (Suppl.): 3028:s177.

McClure NS. Applying the minimally important difference of health-related quality of life index scores in the calculation of quality-adjusted life years. PhD Candidacy Presentation at the School of Public Health, University of Alberta, Edmonton, AB, October 30, 2018.

McClure NS, Jin X, Al Sayah F, Le C, Baghbaninaghadehi F, Ohinmaa A, Johnson JA. Minimally Important Difference Estimates for the EQ-5D: A Systematic Review. Poster Presentation at This is Public Health Week, School of Public Health, University of Alberta, Edmonton, AB, November 8, 2018.

Jin X, Al Sayah F, Ohinmaa A, Marshall DA, Johnson JA. EQ-5D-3L VS EQ-5D-5L: A cross-sectional comparison of measurement properties among total hip and knee replacement patients. [Poster Presentation]. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe 2018, Barcelona, Spain, November 10-14, 2018.

Jin X, Al Sayah F, Ohinmaa A, Marshall DA, Johnson JA. Responsiveness of the EQ-5D-5L and EQ-5D-3L in patients following total hip or knee replacement. [Poster Presentation]. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe 2018, Barcelona, Spain, November 10-14, 2018.

Al Sayah F, Ohinmaa A, Johnson JA. Can the EQ-5D-3L predict post-hospitalization healthcare use and outcomes? [Poster Presentation]. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe 2018, Barcelona, Spain, November 10-14, 2018.

Kashem T, Al Sayah F, Ohinmaa A, Johnson JA. The relationship between individual-level deprivation with health-related quality of life in the general population. [Poster Presentation]. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe 2018, Barcelona, Spain, November 10-14, 2018.

Tawiah A, Al Sayah F, Ohinmaa A, Johnson JA. Discriminative validity of the EQ-5D-5L and SF-12 in older adults with arthritis. [Poster Presentation]. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe 2018, Barcelona, Spain, November 10-14, 2018.

APERSU Accolades

5th Annual APERSU End-User Meeting

October 17 and 18, 2019

Coast Canmore Hotel and Conference Centre

511 Bow Valley Trail

Canmore, AB T1W 1N7