APERSU Newsletter -- Volume 4, Issue 1
Summer 2019

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 spring related to our research program; first Noordjwik, The Netherlands in March for the EuroQol Academy meeting, ICHOM Conference in Rotterdam, The Netherlands in April, and Can-Solve CKD Meeting in May in Montreal. At the CAHSPR Meeting in Halifax, our team organized a panel titled “Putting Patients at the Centre of Health Care: The use of patient-reported outcome measures (PROMs) in the Healthcare System”. The panel presentation was well received; thank you to Linda Watson from Cancer Control Alberta, Emelie Heintz from Karolinska Institute, Shannon Weir-Seeley from CIHI, and Jeff Johnson for participating in the panel.

The APERSU webinar series has continued. We have had two webinars earlier this year and our webinar on disease specific PROMs was on June 20 presented by Fatima Al Sayah. Links for the webinars are on our website.

We welcomed two summer students this summer, Simrat Sandha and Kai-Erh Kao. Both students are Masters students from the School of Public Health, University of Alberta. Please see their bios in this newsletter for more information.

We’ve met with our Board of Directors (BOD) and Scientific Advisory Committee (SAC) via teleconference this spring. Both of the meetings were very productive; we will have face to face meetings of both committees at our 5th Annual APERSU End-User meeting.

Our APERSU Board of Directors members will be changing. Dr. Kim Raine, representative from the School of Public Health will be stepping down as she finishes her term as Associate Dean (Research) with the School of Public Health. Thank you to Kim for serving on our Board for the last three years, it is much appreciated.

The 5th Annual APERSU End-User Meeting, will be held on October 17 and 18, 2019 at the Coast Canmore Hotel and Conference Centre in Canmore, Alberta. We are pleased to announce that Joanne Greenhalgh (Associate Professor, University of Leeds) will be the Keynote Speaker for our meeting this year. Joanne has extensive experience in the field of PROMs, and we are excited to learn more from her research and expertise in the field. Formal invitations to the event will be sent out very soon.

On behalf of the APERSU Team, we would like to take this opportunity to wish all of you a wonderful summer; we hope you are able to enjoy the beautiful warm weather. We will update you on APERSU’s activities in December.

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

5th Annual APERSU End-User Meeting, October 17 and 18, 2019

Save the date -- our 5th Annual APERSU End-User meeting will be held in Canmore at the Coast Canmore Hotel and Conference Centre on October 17 and 18, 2019. We are pleased to announce our keynote speaker for the event, Joanne Greenhalgh (Associate Professor, University of Leeds). Joanne has extensive experience in the field of PROMs, we are excited to learn from her research and expertise in the field. We are also planning presentations and workshops focused on primary care and registry implementation in clinical care. Formal invitations will be sent soon and more details will follow in the coming months.

EMPATHY Trial Update

The Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) Trial is continuing to progress.

The Northern Alberta Renal Program, now known as Alberta Kidney Care – North (AKC-N), began implementing the EMPATHY trial in 17 dialysis units in September 2018. The Southern Alberta Renal Program, now known as Alberta Kidney Care – South (AKC-S), began phasing units into the trial starting in January 2019. All 10 AKC-S dialysis units will be phased in by June 2019. The Ontario Renal Network (ORN) is also phasing units into the trial. They started in April 2019 and all 16 ORN units will be phased in by June 2019.

Jeff Johnson and Kara Schick-Makaraoff are leading a qualitative sub-study to evaluate the EMPATHY intervention in AKC-N. This study protocol has been developed and data collection began in March 2019. Lisa Wozniak and Hilary Short have been visiting various dialysis units enrolled in the study to observe the intervention in practice. They are also interviewing clinicians and patients to elicit their perspectives and experiences of the EMPATHY intervention (PROMs and treatment aids).

Hilary Short and Natalie Ilkiw, the AKC-N and AKC-S coordinators, gave an oral presentation on EMPATHY at Alberta Kidney Days in Calgary on March 15, 2019. Hilary also gave an oral and poster presentation at the Can-SOLVE CKD Annual Meeting in Montreal on May 3, 2019 and another poster presentation at the CAHSPR Conference in Halifax on May 30, 2019.

As for next steps for the EMPATHY team, we are preparing ongoing education material for the nursing staff delivering the EMPATHY intervention, we are preparing a manuscript of the EMPATHY study protocol for publication in a scientific journal, we will develop a plan for data analysis, and disseminate our research findings.

APERSU PCN Working Group

In response to the PCN Assessment conducted in 2018, APERSU established a PCN Working Group. We are happy to welcome the following people as representatives of their PCNs on this working group:
• Krista Brower, Edmonton Oliver PCN
• Ann Makin, Bow Valley PCN
• Margo Schmitt-Boshnick, Red Deer PCN
• Peter Rymkiewicz, Mosaic PCN
• Shea Wilks, Palliser PCN
• Michel Haener, Grande Prairie PCN

The aim of the group is to provide advice and direction to APERSU regarding the education, training, and support requirements of PCNs, in a sharing format. The group has met twice in 2019 and plans to meet 4-5 times a year. So far, discussions have focused on implementation issues, ground-level conditions and context-specific details of PRO measurement in primary care. We hope our future activities will support the co-creation of PCN-tailored resources and products to help all PCNs with PRO measurement.

We are also continuing with one-on-one PCN consultations, aimed to guide and support EQ-5D and PROM implementation to meet local individual PCN needs (i.e. data management, implementation logistics). If you would like more information or to book a consultation, please contact Allison Soprovich (allison.soprovich@ualberta.ca).

APERSU Publications

Al Sayah F, Yeung RO, Johnson JA. Association of Depressive Symptoms and Diabetes Distress With Severe Hypoglycemia in Adults With Type 2 Diabetes. Canadian Journal of Diabetes, 2018; S1499-2671(17)30413-6.

Zhao H, Johnson JA, Al Sayah F, Soprovich A, Eurich D. The association of self-efficacy and hospitalization rates in people with type-2 diabetes: a prospective cohort study. Diabetes Research and Clinical Practice 2018; 143:113-119.

APERSU Presentations

Al Sayah F. Panel member “PROs across the care continuum”. CancerControl Alberta Patient Reported Outcomes Symposium: Going “PRO” in Alberta. November 22–23, 2018, Calgary AB. [Invited Talk].

Jin X. Responsiveness and Minimally Important Difference (MID): What, Why, and How? China Pharmaceutical University, December 12, 2018, Nanjing, China. [Invited Talk].

Jin X. Responsiveness and Minimally Important Difference (MID) of PROMs: What, Why, and How? Tianjin University, December 27, 2018, Tianjin, China. [Invited Talk].

Al Sayah F. Introduction to Patient-reported Outcomes (PROs). Center of Clinical, Health Economics, and Outcomes Research (CCHO), January 11, 2019, Beirut, Lebanon. [Invited Talk].

Al Sayah F. PROMs/EQ-5D data interpretation using population norms, February 27, 2019 [Webinar]

Ilkiw N and Short H. EMPATHY Initiative [Oral Presentation]. 2019 Alberta Kidney Days, March 15, 2019, Calgary, Alberta.

McClure NS, Xie F, Johnson JA. Individual and public preferences for health states: what can be learned from ties in EQ-5D-5L time-trade-off valuation studies? [Poster Presentation] 2019 Canadian Agency for Drugs and Technologies in Health Symposium, Edmonton, AB, April 14, 2019.

Jin X, McClure NS, Le CY, Baghbaninaghadehi F, Al Sayah F, Ohinmaa A, Johnson JA. Minimally Important Differences for EQ-5D instruments: A Systematic Review of Estimates in Published Literature. [Poster Presentation] 2019 Canadian Agency for Drugs and Technologies in Health Symposium, Edmonton, AB, April 14, 2019.

Round J (presenter), Al Sayah F (moderator). The use of PROMs/EQ-5D in economic analyses (beyond cost-effectiveness analysis) – April 25, 2019. [Webinar].

Short H. EMPATHY Trial: Evaluation of routinely measured patient reported outcomes in hemodialysis care [Oral Presentation]. 2019 Can-SOLVE CKD Annual Meeting, May 3, 2019, Montreal, Quebec.

Johnson JA, Buzinski R, Corradetti B, Davison S, Dupperon P, Klarenbach S, Manns B, Short H, Thomas C, Walsh M. Evaluation of routinely measuring patient reported outcomes in hemodialysis care (EMPATHY): Implementing a cluster randomized controlled trial at the health system level [Poster Presentation]. 2019 CAHSPR Scientific Conference, May 29-31, 2019, Halifax, Nova Scotia.

Johnson JA, Watson L, Heintz E, Weir-Seeley S. “Putting Patients at the Centre of Health Care: The use of patient-reported outcome measures (PROMs) in the Healthcare System”. [Panel]. 2019 CAHSPR Scientific Conference, May 29-31, 2019, Halifax, Nova Scotia.

Al Sayah F. Disease-Specific PROMs: When and how to use them? June 20, 2019 [Webinar].

Upcoming Events

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

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