APERSU Newsletter -- Volume 6, Issue 2
Winter 2021

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.

We hope everyone is staying safe and healthy.

The APERSU Team is still working from home due to the COVID-19 situation and will continue to do so until it is deemed safe to return to campus. Thankfully, everyone on our team has stayed safe and healthy to date.

We would like to welcome Ademola Itiola, a new PhD student in Health Policy and Research under Jeff Johnson’s supervision. Ademola joined the PhD program in September 2021; you can read more about Ademola in his bio, further on in the newsletter.

We hosted the APERSU Board of Directors Meeting and the APERSU Scientific Advisory Committee Meeting virtually again this year, in October. Thank you to all members of these groups for their ongoing participation and expertise; we appreciate their commitment, their insights and direction.

We are pleased to report that the Health Quality Council of Alberta (HQCA) has been able to provide us with $140,000 in operating funding. Thank you to HQCA and Alberta Health Services (AHS) for their ongoing funding commitment to APERSU.

We have undertaken a number of knowledge translation activities in the past few months. A major highlight for APERSU is the recently published supplement in the Journal of Patient-Reported Outcomes, a series of 10 papers describing the implementation of PROMs programs in different clinical areas within Alberta, and how these programs may be used to inform health care decisions. More on this, as well as overviews of other studies we are conducting, are further on in the newsletter.

Allison Soprovich, along with two members of our APERSU PCN Working Group, participated in the virtual North American Primary Care Research Group (NAPCRG) Annual Meeting in November. They presented a workshop on the selection of PROMs in primary care.

As we are unable to plan a face-to-face APERSU End-User Meeting, we will again be hosting an online webinars and forums over the winter months, as we did last year. The next Virtual Symposium will be on Tuesday, February 8 at 09:00 am to 11:00 am MST, titled: "The Use of PROMs in Health Systems: 3 Implementation Stories." The speakers for this session will be: Krista Brower, Dr. Linda Watson, Dr. Deborah Marshall; moderated by Dr. Jeff Johnson.

On behalf of the APERSU Team, I 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 2022.

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.

Newly Published Journal of Patient-Reported Outcomes Supplement

As part on our ongoing knowledge translation grant, from the EuroQol Foundation, we coordinated the publication of a supplement issue of the Journal of Patient-Reported Outcomes in October 2021. The papers showcase the best examples of PROMs implementation in Alberta, with work involving local, provincial and national PROMs stakeholders and users. Experts wrote short reports of their experience implementing PROMs in the following clinical areas: hip and knee arthroplasty, oncology, primary care, epilepsy, community rehabilitation and hemodialysis. In addition, two commentary-style papers opened and closed the supplement, as well as two broad papers outlining the multi-level approach to PROMs data and the selection of PROMs in health systems. To access the papers, please click on the "JPRO Supplement" button below:

To help disseminate key messages from selected papers, we produced short video-bytes; 1-minute visual summaries of the papers. To view the video bytes, please click on the "Video Bytes" button below:

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

EQ-DAPHNIE is a multi-year, multi-country initiative to create an expansive research infrastructure for the EuroQol (EQ) group. This infrastructure will support a variety of future research projects with specific research objectives characterized under two broad domains:

(1) Population health status and

(2) Comparative performance/validation of instruments.

EQ-DAPHNIE will employ a cross-sectional survey design of the general adult population in each country, using a web-based data collection agency, with options to include sub-populations. The resulting datasets would be owned by the EQ Group (in a manner similar to ownership of EQ instruments) and would be accessible to EQ members to explore relevant research questions within these two broad project objectives.

EQ-DAPHNIE is co-led by Jeff Johnson and Bas Janssen with 13 co-investigators who are EQ members, interested in creating such an infrastructure, and exploring these research objectives. Two of the co-investigators are designated from the EQ Executive Committee, to ensure close connection and regular reporting; Erica Lubetkin and Rosalie Viney have agreed to take on this role. These 4 EQ members serve as the EQ-DAPHNIE Project Executive Committee.

EQ-DAPHNIE is planned to run for 3 years initially, with the possibility of extended for an additional 3 years. In year 1, the Project Team and methodologic plan will be established, followed by the first wave of country-specific surveys.

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

APERSU Primary Care Networks Working Group Update

We welcomed two new members to the APERSU PCN Working Group in 2020 – Nolan Schaaf with Chinook PCN; and Shelanne Hepp with Calgary Rural PCN. Our fall meeting focused on member updates, revising our Terms of Reference and our collaborative projects involving the sharing of PROMs implementation stories in primary care to local and national audiences.

Krista Brower (Edmonton Oliver PCN) and Michel Haener (Grande Prairie PCN) joined Allison Soprovich (APERSU) in presenting a workshop at the North American Primary Care Research Group (NAPCRG) 49th Annual Meeting, titled "Selecting Appropriate Patient-Reported Outcome Measures (PROMs) For Your Research". It was a 90-min interactive virtual workshop outlining eight steps in selecting PROMs, two examples of real-life primary care applications and two case studies. Approximately 20 people attended the workshop on November 23, 2021.

Our next APERSU PCN Working Group meeting will be early 2022.

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).

APERSU Publications

Chemli J, Drira C, Felfel H, Roudijk B, Al Sayah F, Kouki M, Kooli A, Razgallah Khrouf M. Valuing health-related quality of life using a hybrid approach: Tunisian value set for the EQ-5D-3L. Qual Life Res. 2021;30(5):1445-1455. PMID: 33447958.

Wen J, Jin X, Al Sayah F, Short H, Ohinmaa A, Davison SN, Walsh M, Johnson JA. Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease. Qual Life Res. 2021 Jul 19. doi: 10.1007/s11136-021-02948-5. PMID: 34278540.

Al Sayah F, McAlister FA, Ohinmaa A, Majumdar SR, Johnson JA. The predictive ability of EQ-5D-3L compared to the LACE index and its association with 30-day post-hospitalization outcomes. Qual Life Research 2021;30(9):2583-2590. PMID: 33974221.

McClure NS, Paulden M, Ohinmaa A, Johnson JA. Modifying the quality-adjusted life year calculation to account for meaningful change in health-related quality of life: insights from a pragmatic clinical trial. European Journal of Health Economics 2021;22(9):1441-1451. PMID: 34089409.

Wen J, Jin X, Al Sayah F, Johnson JA, Paulden M, Ohinmaa A. Economic Evaluation of Sucrose Octasulfate Dressing for the Treatment of Diabetic Foot Ulcers for Type 2 Diabetes Patients. Canadian Journal of Diabetes 2021.

Wu X, Veugelers P, Ohinmaa A. Health behaviour, health-related quality of life, and mental health among Canadian children: a population-based cohort study. Frontiers in Nutrition 2021; 8:638259; 1-11. doi: 10.3389/fnut.2021.638259 (IF 3.365).

Saravana-Bawan B, Warkentin L, Ohinmaa A, Wagg A, Padwal R, Clement F, Holroyd-Leduc J, Khadaroo R. Patients reported outcomes in an elder-friendly surgical environment: Prospective, controlled before-after study. Annals of Medicine and Surgery 2021;65: May:102368. PMID: 34026101.

Dean S, Al Sayah F, Johnson JA. Measuring value in healthcare from a patients’ perspective. J Patient Rep Outcomes 2021;5(Suppl 2):88. PMID: 34637001.

Al Sayah F, Lahtinen M, Bonsel GJ, Ohinmaa A, Johnson JA. A multi-level approach for the use of routinely collected patient-reported outcome measures (PROMs) data in healthcare systems. J Patient Rep Outcomes 2021;5(Suppl 2):98. PMID: 34637031.

Al Sayah F, Jin X, Johnson JA. Selection of patient-reported outcome measures (PROMs) for use in health systems. J Patient Rep Outcomes 2021;5(Suppl 2):99. PMID: 34637010.

Davison SN, Klarenbach S, Manns B, Schick-Makaroff K, Buzinski R, Corradetti B, Short H, Johnson JA. Patient-reported outcome measures in the care of in-centre hemodialysis patients. J Patient Rep Outcomes 2021;5(Suppl 2):93 (Correction in 5:115). PMID: 34637030.

Delgado-García G, Wiebe S, Josephson CB. The use of patient-reported measures in epilepsy care: the Calgary Comprehensive Epilepsy Program experience. J Patient Rep Outcomes 2021;5(Suppl 2):83. PMID: 34636998.

Marshall DA, Jin X, Pittman LB, Smith CJ. The use of patient-reported outcome measures in hip and knee arthroplasty in Alberta. J Patient Rep Outcomes 2021;5(Suppl 2):87. PMID: 34636973.

Churchill K, Warner L, Keogh E, Al Sayah F. Implementation of EQ-5D-5L as a routine outcome measure in Community Outpatient and Specialized Rehabilitation Services. J Patient Rep Outcomes 2021;5(Suppl 2):103. PMID: 34637018.

Watson L, Delure A, Qi S, Link C, Chmielewski L, Photitai E, Smith L. Utilizing Patient Reported Outcome Measures (PROMs) in ambulatory oncology in Alberta: Digital reporting at the micro, meso and macro level. J Patient Rep Outcomes 2021;5(Suppl 2):97. PMID: 34637003.

Brower K, Schmitt-Boshnick M, Haener M, Wilks S, Soprovich A. The use of patient-reported outcome measures in primary care: applications, benefits and challenges. J Patient Rep Outcomes 2021;5(Suppl 2):84. PMID: 34636988.

Terner M, Louie K, Chow C, Webster G. Advancing PROMs for health system use in Canada and beyond. J Patient Rep Outcomes 2021;5(Suppl 2):94. PMID: 34636980.

Schick-Makaroff K, Wozniak LA, Short H, Davison SN, Klarenbach S, Buzinski R, Walsh M, Johnson JA. Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study. J Patient Rep Outcomes 2021;5(1):111. PMID: 34709470.

APERSU Webinars/Online Forums/Presentations

Schick-Makaroff K, Wozniak L, Short H, Davison SN, Klarenbach S, Buzinski R, Johnson JA. How the routine use of PROMs for hemodialysis care influences patient-clinician communication: a mixed methods study. Virtual ISOQOL 28th Annual Conference, Oct 12-28, 2021. Quality of Life Research.

Soprovich, A., Brower, K. & Haener, M. Selecting appropriate patient-reported outcome measures (PROMs) for your research. North American Primary Care Research Group 49th Annual Meeting. Virtual workshop, November 23, 2021.

Upcoming Events

APERSU Virtual Symposium

The Use of PROMs in Health Systems: 3 Implementation Stories

Moderated by Dr. Jeff Johnson

Speakers: Krista Brower, Dr. Linda Watson, Dr. Deborah Marshall

Tuesday, February 8, 2022
09:00 am to 11:00 am MST

The detailed program, registration information and Zoom link will be available in January 2022. For any questions, contact apersu@ualberta.ca.

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