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APERSU Newsletter -- Volume 5, Issue 2
Winter 2020

Report from Co-Directors

Arto Ohinmaa

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

We hope everyone is staying safe and healthy during these unprecedented times. The APERSU Team is still working from home due to the COVID-19 situation and will continue to do so throughout the Winter 2021 term. Thankfully, everyone on our team has stayed safe and healthy to date.

The APERSU Team has attended and presented at virtual conferences including EuroQol Plenary, 27th Annual International Society for Quality of Life Research (ISOQOL), and The 2020 North American Primary Care Research Group (NAPCRG).

Congratulations to Jiabi Wen for successfully completing her MSc exam in July. Jiabi is continuing on to pursue a PhD with Arto Ohinmaa as her supervisor.

We have continued to host the Webinar Series: Linda Watson from Cancer Control Alberta, presented in July; members of the Primary Care Working Group will present in December. In November, we co-hosted an on-line forum on emerging topics on PROMs in osteoarthritis and arthroplasty, with speakers from coast-to-coast across Canada. You can view these webinars, or previous ones, on our website at

We hosted the APERSU Board of Directors Meeting and the APERSU Scientific Advisory Committee Meeting virtually this year, both on October 16, 2020. Both the Board of Directors and Scientific Advisory Committee provided us with valuable direction. Thank you all for your input and support of APERSU. We normally host these meetings at our annual APERSU End-User Meeting but given our current environment, we are hosting two online forums in place of the face-to-face meeting. As mentioned above, the PROMs in Osteoarthritis and Arthroplasty Online forum was held on November 25 and you will read more on that elsewhere in this newsletter; the other online forum on Primary Care PROMs will be held in the New Year.

Our APERSU Scientific Advisory Committee welcomes two new members, Mary Modayil of Alberta Health Services (AHS), and Michael Terner from Canadian Institute of Health Information (CIHI). We also have a new Chair of our Scientific Advisory Committee, Markus Lahtinen of the Health Quality Council of Alberta (HQCA). We would like to thank Nancy Devlin of the University of Melbourne for her service on the committee as Nancy has decided to step down from the committee. Nancy was the inaugural Chair of the APERSU Scientific Advisory Committee, then served as a member. Thank you all for your willingness to serve on this committee and for past/present service.

We also had a change on the APERSU Board of Directors. Thank you to Charlene McBrien-Morrison, HQCA, for her service on the Board and we would like to welcome Markus Lahtinen, new HQCA representative on the APERSU Board of Directors.

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

You can unsubscribe from this newsletter by emailing us at

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


Emerging Topics on PROMs in Osteoarthritis and Arthroplasty Online Forum

In lieu of our annual End-user meeting, APERSU hosted a two-and-a-half-hour online forum on on Wednesday, November 25, 2020, on “Emerging Topics on PROMs in Osteoarthritis and Arthroplasty”. Six experts from across Canada presented the following:
• Canada & OECD PROMs at CIHI: Data standards, collecting and reporting – Michael Terner (Canadian Institute of Health Information)
• PROMs in outcome measurement frameworks – Deborah Marshall (University of Calgary, Alberta Bone and Joint Health Institute)
• PROMs implementation in Nova Scotia’s clinical orthopaedic care path – Jo-Anne Douglas & Caleb Godbout (Nova Scotia Health)
• Using PROMs in patient-decision aids – Nick Bansback (University of British Columbia)
• Reporting PROMs following hip and knee arthroplasty – How should we? – Eric Bohm (University of Manitoba, Centre for Healthcare Innovation)

All presenters gave a short presentation, Q&A, as well as participated in a full panel discussion; the forum was moderated by Jeff Johnson. Forum proceedings will be posted on our website soon. Thank you to the presenters and participants, and to CIHI and ABJHI for their support in organizing the forum.


EMPATHY Trial Update

The Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) project is a cluster randomized controlled trial (RCT) that was implemented in three renal programs: Alberta Kidney Care – North (AKC-N), Alberta Kidney Care – South (AKC-S), and Ontario Renal Network (ORN). While AKC-N completed the 1-year trial period in October 2019, the COVID-19 pandemic put the trial on hold in AKC-S and ORN. Trial activities resumed over the summer and both renal programs will complete data collection by the end of November 2020. The EMPATHY research team looks forward to meta-analyzing all the data together in the coming months. To learn more about the EMPATHY trial, click here to read the protocol paper which was recently published in BMC Health Services Research.

In addition to the RCT, all renal programs collected qualitative data from patients and clinicians to evaluate the routine use of patient-reported outcome measures (PROMs) for clinical care in the hemodialysis setting. The AKC-N team produced a mixed-methods analysis of the burden of mental health symptoms and perceptions of their management in hemodialysis care. The following includes some key findings from this analysis:
• The burden of mental health symptoms in Northern Alberta dialysis patients was similar to existing literature, with 30% screening positive for depressive symptoms, 21% screening positive for anxiety symptoms, and 16% screening positive for both.
• From the qualitative data we identified 3 themes and 3 tensions where the themes overlap.


• PROMs had the potential to identify and prompt management of mental health symptoms (theme 1) but there were varying opinions within and between patients and nurses that mental health is within the scope of dialysis (theme 2). Additionally, there was a view that resources for mental health care were limited in these dialysis centers (theme 3).
• Many nurses believed that patients did not want to identify or manage mental health symptoms within the context of dialysis, creating a tension of identifying mental health issues that “don’t belong” within a traditional kidney culture of practice.
• The dialysis setting is ultimately unconducive for mental health management because of the prevailing opinion that mental health is out of scope of dialysis care and inadequate resources (e.g., access to mental health providers and services, knowledge to address mental health concerns, and privacy to discuss mental health issues).
• Often times the onus may be placed on patients to seek out mental health supports outside dialysis care, placing an additional and undue burden on patients; offloading work from clinicians and unfortunately, not all patients have the acumen for self-advocacy.
• In conclusion, there is a need for ongoing systemic decisions about how routine PROM use that includes mental health assessment may best be addressed in practice to meet patients’ needs.

To learn more about this study, you can click here to view a virtual poster that was prepared for the 27th Annual International Society for Quality of Life Research (ISOQOL) conference on October 19-23, 2020. We have also prepared a manuscript that is currently under review for publication.

The ORN team also recently published an article on patient and provider perspectives on implementing PROMs for hemodialysis care in Clinical Journal of the American Society of Nephrology. Click here to view the article. The COVID-19 pandemic disrupted qualitative data collection in AKC-S, but the team is planning to resume work with the data they have.

As previously mentioned, we look forward to progressing on meta-analyzing the data from the RCT from all renal programs in the new year. All renal programs have implemented or are working toward sustainability plans for PROMs in hemodialysis care, with EMPATHY results to guide official decision-making.

For more information on EMPATHY, please contact Hilary Short (


APERSU PCN Working Group Update

A heartfelt thank you to all those working in the health system for their time and energy in battling COVID-19.

The PCN Working Group has been busy balancing COVID-19 response with ongoing work in their respective primary care settings. Recently, select members contributed to a paper to be included in the forthcoming JPRO Supplement “The use of patient-reported outcome measures in health systems – Implementation stories from Alberta, Canada”. Along with Allison Soprovich from APERSU, Krista Brower (Edmonton Oliver PCN) and Margo Schmitt-Boshnick (Red Deer PCN) presented at the North American Primary Care Research Group (NAPCRG) Annual Meeting on the use of PROMs in their PCNs. APERSU also recently provided an online workshop at the College of Family Physicians of Canada, Family Medicine Forum. These activities continue to highlight the importance of collecting PROMs in primary care to complement other outcomes at the micro, meso and macro levels.

Join us on Wednesday, December 9th 12:00-1:00pm (MST), when four of our PCN Working Group members will participate in the APERSU Webinar series – “The use of routinely collected PROMs data in Primary Care Networks in Alberta”. PCNs have innovatively used PROMs and other data sources for the comprehensive evaluation of local primary care programs and services. We will showcase their experiences, and discuss the benefits and challenges of PROMs in primary care. Click here to register.


APERSU Publications

Thomas S, Johnson J, Xie F. 3125 steps to perfect health: A nonparametric approach to developing the EQ-5D-5L value set. Qual Life Research 2020:29(11);3109-3118. PMID: 32705459.

Johnson JA, Al Sayah F, Buzinski R, Corradetti B, Davison SN, Elliott MJ, Klarenbach S, Manns B, Schick-Makaroff K, Short H, Thomas C, Walsh M. A cluster randomized controlled trial for the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY): A study protocol. BMC Health Services Research 2020:20(1):731. PMID: 32778102.

APERSU Webinars

Watson L. The use of routinely collected PROMs data at Cancer Control Alberta. APERSU Webinar Series, July 30, 2020.

APERSU Presentations

Wen J, Jin X, Al Sayah F, Short H, Johnson JA, Ohinmaa A. Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease. Alberta Health Economics Study Group 2020 (virtual). Discussion Paper. October 2, 2020

Schick-Makaroff K, Wozniak L, Short H, Davison S, Klarenbach S, Buzinski R, Johnson J. Burden of mental health symptoms and perceptions of their management in hemodialysis care: a mixed methods study. Virtual ISOQOL 27th Annual Conference, October 19-23, 2020.

Al Sayah F, Lahtinen M, Bonsel G, Ohinmaa A, Johnson JA. A multi-level approach for the use of routinely collected patient-reported outcome measures (PROMs) data in health systems. Virtual ISOQOL 27th Annual Conference, Oct 19-23, 2020.

Al Sayah F, Churchill K, Warner L. Using routinely collected patient-reported outcome measures (PROMs) data in evaluating community rehabilitation services in Alberta, Canada. Virtual ISOQOL 27th Annual Conference, Oct 19-23, 2020.

Soprovich, AL, & Al Sayah, F. Using patient-reported outcomes (PROs) in your clinical practice. The College of Family Physicians of Canada, Family Medicine Forum. November 4-7, 2020.

Soprovich, AL, Brower, K., & Schmitt-Boshnick, M. Illuminating patient voices: Using patient-reported outcome measures (PROMs) at multiple levels. North American Primary Care Research Group (NAPCRG) 48th Annual Meeting. November 20-24, 2020.



Congratulations to Jiabi Wen on completion of her MSc Oral Exam. Great work Jiabi!

Congratulations to Nathan McClure on his marriage to Lindsay McInnes in August.


Upcoming Events


APERSU Webinar Series

"The use of routinely collected PROMs data in Primary Care Networks in Alberta"

Presenters: Krista Brower, Margo Schmitt-Boshnick, Michel Haener, Shea Wilks

Moderator: Allison Soprovich

December 9, 2020, 12:00 pm to 1:00 pm, click here to register


APERSU Online Forum on Primary Care PROMs

January, 2021 (Exact dates TBD)


Our Contact Information:
University of Alberta
2-040 Li Ka Shing CHRI
Edmonton, Alberta, Canada
Phone: 780-248-1010

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