APERSU Newsletter -- Volume 7, Issue 1
Winter 2022

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 has returned to the office on a hybrid basis after 26 months of working from home, due to the COVID-19 pandemic. It is great to see everyone in person rather than only seeing them virtually for so long!

We would like to welcome Ana Fuhrmann, a visiting PhD student from the School of Nursing at the Universidade Federal do Rio Grande do Sul, Brazil. Ana arrived in September; she will be with our group for a year. You can read more about Ana in her bio, further on in the newsletter.

We have had some staffing changes in the past year. First of all, welcome back to Fatima Al Sayah on her return from maternity leave. Fatima has returned to her position on a part-time basis. Some of Fatima’s duties are now taken over by Allison Soprovich, in Allison’s new position as APERSU End-User Lead.

We hosted the 6th APERSU End-User meeting in the beautiful City Room, Peter Lougheed Hall on the University of Alberta Campus on October 13 and 14, 2022. This was our first hybrid event ever where we welcomed both in-person and virtual attendees. There is more on this event further on in the newsletter.

We will be hosting the 7th APERSU End-User Meeting on October 16 & 17, 2023 at the Delta Calgary Downtown. This will be a hybrid event. Please hold these dates in your calendars; more information will be sent out later in the new year.

The APERSU Board of Directors Meeting took place in October during our 6th APERSU End-User Meeting. We are sad to have had to say goodbye to one of our board members, Larry Svenson, upon his passing this past year. We are happy to report Alex Alexander will join the board as the representative from Alberta Health. We would like to thank Candace Nykiforuk for her service on the board during her tenure as Associate Dean of Research of the School of Public Health. Thank you to the members of the Board of Directors for their ongoing commitment and thank you to Alberta Health Services, Alberta Health, and the Health Quality Council of Alberta for their ongoing funding and support of APERSU.

We have decided to dismantle the APERSU Scientific Advisory Committee. We plan on reaching out to specific individuals for advice on specific topics, which we hope will be a more efficient use of time for all involved. We appreciate the direction the committee gave us in our formative years and we would like to thank all members for their valuable insight and contributions over the years.

We have undertaken some new projects and have obtained funding from the EuroQol Foundation for these projects, namely, EuroQol Data for Assessment of Population Health Needs & Instrument Evaluation (EQ-DAPHNIE) and the Decision Aid project. Thank you very much to the EuroQol Research Foundation for their ongoing funding of our research projects. We are very grateful for the support. More on these projects are reported further on in the newsletter.

Allison Soprovich presented, in-person, at two conferences in November; a workshop on selecting patient-reported outcome measures (PROMs) at the Family Medicine Forum in Toronto and two workshop presentations on selecting the appropriate PROMs for research and overcoming challenges to using PROMs in primary care at the North American Primary Care Research Group (NAPCRG) Annual Meeting in Phoenix.

On behalf of the APERSU Team, we would like to wish you all a great holiday season and most importantly, stay safe and healthy! We will update you again on APERSU’s activities in June 2023.

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

We look forward to sharing our progress with you biannually in future newsletters.

6th Annual APERSU End-User Meeting, October 13 and 14, 2022

On October 13 and 14, APERSU hosted its 6th End-User Meeting, our first hybrid meeting, where we accommodated both online and in-person participation. The conference was held at the City Room, Peter Lougheed Hall, University of Alberta Campus in Edmonton. We hosted in-person delegates from across Canada, the United States, the Netherlands and Australia, with virtual attendees and presenters from across the globe.

Presentations and discussions about patient-reported outcomes measures (PROMs) focused on different health settings across Alberta, Canada and internationally. Its purpose was to inform and bring together users and interested parties of PROMs to discuss and share experiences and opinions. While PROM programs and implementation are very diverse, we aimed to examine real-world examples at the micro, meso and macro levels. Over the 2 days, approximately 70 people attended, 40% online.

The morning of day one featured various end-users reflecting and presenting on using PROMs for health system evaluation. This included presentations by Jeff Johnson (EMPATHY trial, APERSU), Elieen Keogh and Laura Benard (AHS Community Rehabilitation), Linda Watson (Cancer Care Alberta) and Michael Terner (CIHI). In the afternoon, local (Arto Ohinmaa, APERSU; Deborah Marshall, Erin McCabe and Maria Santana, UofC), national (Feng Xie, McMaster University) and international (Renee Jones and Nancy Devlin, University of Melbourne; and Michael Herdman, EuroQol Group) experts in PROMs and EQ-5D in children and youth presented on their work. The day ended with a board discussion on PROMs and measurement in children and youth, including methodological challenges and future developments.

The morning of day two showcased new development and directions for PROMs in primary care. This was hosted by the APERSU PCN Working Group. More details about this session are in the APERSU PCN Working Group update section of this newsletter. Merrill Cooper (The Alex) also presented their use of PROMs in a different primary care setting. In the afternoon, Julie Flemming (AHS), Linda Watson (Cancer Care Alberta), Roland Simon and Markus Lahtinen (HQCA) presented projects, data and opportunities for PROMs and PREMs related to COVID-19.

Selected students and end-users also were highlighted in giving 3-min lightning presentations over the 2 days.

We thank everyone (especially our AV team) for the meeting's success.
The entire event was recorded. Links to the separate presentation recordings are available on our website: https://apersu.ca/news/annualmeetings/

EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) Update

As mentioned earlier, we obtained funding from the EuroQol Research Foundation to support the EQ-DAPHNIE project. The overall aim of the EQ-DAPHNIE project is to create research infrastructure for the EuroQol Group that would support future research projects which have specific research objectives/questions.

The breadth of potential research topics would be characterized under two broad domains: 1) Population health status (e.g., develop country-specific population norms, social determinants of health and population health inequities); 2) Comparative performance and validation of instruments (e.g., EQ-HWB vs. EQ-5D-5L).

In the first year of this project, we have achieved the following milestones:
• Established Project Team
• Established charter for data management/sharing
• Invited EuroQol membership to propose research questions and measures
• Established a contract with Maths in Health (MiH) for survey programming and liaising with data collection agency (Dynata)
• MiH purchased and configured EQ-DAPHNIE servers
• Received ethics approval
• Finalized modules for pilot survey in the United Kingdom

In the new year, we will conduct the pilot survey in the UK and evaluate pilot data for quality. We will modify the survey as necessary for the first wave of English surveys in Canada, Australia, New Zealand, the United States, and the United Kingdom.

For more information, contact the project coordinator, Hilary Short (heshort@ualberta).

APERSU Primary Care Networks Working Group Update

Over 2022, we said farewell to two members and welcomed two more. Shelanne Hepp moved on from Calgary Rural PCN and Krista Brower moved to the role of Executive Director for EOPCN. Krista passed the representation of EOPCN onto Al-Bakir Ali and we welcomed Kara Plotnikoff from Calgary Foothills PCN. We thank Shelanne and Krista for their work and commitment to the group and wish them success in their new roles. We look forward to working with Al-Bakir and Kara, hearing their perspectives, and learning from their experiences.

As part of our APERU End-User meeting this fall, the PCN Working Group coordinated a half-day dedicated to PROMs in primary care. Panelists, Michel Haener (Grande Prairie PCN), Margo Schmitt-Boshnick (Red Deer PCN), Al-Bakir Ali (EOPCN), Krista Brower (EOPCN) and Allison Soprovich (APERSU), presented and lead discussion about their views on the current state of PROMs in Alberta PCNs. Specifically, the topics of electronic capture, applications and use in decision-making, and leveraging PROMs in the medical home and patient-centered care were discussed. The morning ended with a lively Town Hall examining the future use of PROMs at the mico, meso and macro levels. Other attendees, both virtual and in-person participated. This uncovered systemic issues related to data sharing and integration across the health system, but also fostered opportunities for future connections and collaborations.

Our next PCN Working Group meeting will be in early 2023. We hope to build on the discussions from our End-User meeting and to connect with other PCNs in further examining the current state of PROMs in primary care in Alberta.

The APERSU PCN Working Group continues to support PROMs in primary care in Alberta, including implementation practices, research projects and dialogue with other PCNs across Alberta. APERSU is also continuing to offer one-on-one PCN consultations, aimed to guide and support PROMs implementation and use. If you would like more information or to book a consultation, please connect with Allison Soprovich (allison.soprovich@ualberta.ca).

Individualized Decision Aid for Total Knee Replacement Surgery Implemented in Routine Clinical Practice Study

This study will examine the effectiveness of an online, individualized patient decision aid for total knee replacement surgery to improve the quality of patient choices. The decision aid will be implemented across Alberta through the Alberta Bone and Joint Health Institute (ABJHI). This individualized decision aid is innovative in that it enables patients to consider individuals with similar characteristics, using basic demographic information (i.e., age, sex, and BMI) and a patient-reported outcome measure (PROM) (i.e., the EQ-5D), and compare the likelihood of surgical outcomes to their unique situation.

We will measure the effectiveness of the decision aid by analyzing data routinely collected by ABJHI. Measures will include the Hip and Knee Decision Quality Instrument, the Satisfaction with Decision Instrument, a patient-reported outcome measure (i.e., EQ-5D) and a patient-report experience measure (PREM).

Prior to evaluating its effectiveness, we will conduct usability testing of the individualized decision aid with patients, including how best to visualize and summarize EQ-5D data. Usability of the decision aid will be measured using the 10-item System Usability Scale (SUS), the Acceptability Scale, and the 10-item Preparation for Decision Making Scale (PDMS). Taken together, patient feedback will be used to improve the decision aid prior to its routine implementation.

This study is co-led by Jeff Johnson (and EQ member) from the University of Alberta and Deborah Marshall from the University of Calgary. This study is planned to run for 2 years. In the first half of 2023, we will conduct the usability testing. Based on this work, we anticipate that the individualized decision aid will be implemented province-wide by mid-2023. Aspects of this study have recently been funded by the EuroQol Foundation and we thank them for their support.

For any questions about this project, please contact Lisa Wozniak at lwozniak@ualberta.ca.

APERSU Publications

Derkach M, Al Sayah F, Ohinmaa A, Svenson LW, Johnson JA. Comparative Performance of the EuroQol EQ-5D-5L and the CDC Healthy Days Measures in Assessing Population Health. J Patient Rep Outcomes. 2022;6(1):64. PMID: 35696002.

Al Sayah F, Lahtinen M, Simon R, Higgins B, Ohinmaa A, Johnson JA. The impact of COVID-19 pandemic on health-related quality of life of adults visiting emergency departments and primary care settings in Alberta. Can J Public Health. 2022 Feb;113(1):96-106. PMID: 35015286.

McClure N, Xie F, Paulden M, Ohinmaa A, Johnson J. Small differences in EQ-5D-5L health utility scores were interpreted differently between and within respondents. Journal of Clinical Epidemiology 2022; 142:Feb 01:133-143. PMID: 34737062.

Schick-Makaroff K, Wozniak LA, Short H, Davison SN, Klarenbach S, Buzinski R, Walsh M, Johnson JA. How the Routine Use of Patient-Reported Outcome Meausres for Hemodialysis Care Influences Patient-Clinician Communication: A Mixed-Methods Study. Clin J Am Soc Nephrol 2022;17(11):1631-1645. PMID: 36283760.

Wen J, Al Sayah F, Simon R, Lahtinen M, Johnson JA, Ohinmaa A. Self-reported health-related quality of life of the general population in Alberta, Canada, during the COVID-19 pandemic. JPRO 2022;6(1):109. PMID: 36224297.

APERSU Webinars/Online Forums/Presentations

Wen J, Al Sayah F, Simon R, Lahtinen M, Johnson JA, Ohinmaa A. A longitudinal analysis on health-related quality of life during the COVID-19 pandemic in Alberta, Canada. 2nd EuroQol Early Career Researchers Meeting, Apr 20, 2022.

Schick-Makaroff K, Wozniak L, Short H, Davison SN, Klarenbach S, Buzinski R, Walsh M, Johnson JA. How the routine use of PROMs for hemodialysis care influences patient-clinician communication: a mixed methods study. 54th Canadian Society of Nephtology (CSN) Virtual Annual General Meeting, May 12-14, 2022.

Soprovich A. Selecting patient-reported outcome measures (PROMs). Family Medicine Forum 2022. Toronto, Ontario. November 8-12, 2022.

Soprovich A. Selecting appropriate patient-reported outcomes (PROMs) for your research. North American Primary Care Research Group (NAPCRG) 50th Annual Conference. Phoenix, Arizona. November 18-22, 2022.

Soprovich A. Overcoming common challenges to using patient-reported outcome measures (PROMs) in primary care. North American Primary Care Research Group (NAPCRG) 50th Annual Conference. Phoenix, Arizona. November 18-22, 2022

Upcoming Events

7th APERSU End-User Meeting

October 16 and 17, 2023

Delta Calgary Downtown

209 4th Avenue SE

Calgary, AB T2G 0C6

Our Contact Information:
APERSU
University of Alberta
2-040 Li Ka Shing CHRI
Edmonton, Alberta, Canada
email: apersu@ualberta.ca
Website: www.apersu.ca
Phone: 780-248-1010