APERSU Newsletter -- Volume 4, Issue 2
Fall/Winter 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 once again had a very busy travel schedule since our last report:

We welcomed a visiting PhD student from Sweden this summer, Olivia Ernstsson. Olivia is a student with the QRC Stockholm Research Unit & Health Economics and Economic Evaluation Research Group, Karolinska Institute. Olivia’s PhD research is about the use of patient-reported outcome measures (PROMs) in clinical registries. She worked with Jeff and the APERSU team to learn more about how PROMs are used in Alberta. We hope she enjoyed her time with us.

Our APERSU Board of Directors welcomed a new member, Candace Nykiforuk, Associate Dean (Research) for the School of Public Health. Our APERSU Scientific Advisory Committee also welcomed a new member, Marie Varughese, from Alberta Health. Thank you to Kim Raine, former School of Public Health Board of Directors member, and Erin Kirwin, former Alberta Health Scientific Advisory Committee member, for their service.

The 5th Annual APERSU End-User Meeting was held on October 17 and 18, 2019, at the Coast Canmore Hotel and Conference Centre in Canmore, Alberta. More information on this meeting is provided below. We have also been active in providing digital seminars through our APERSU webinar series. Links for the webinars are on our website.

On behalf of the APERSU Team, I would like to take this opportunity to wish all of you a wonderful holiday season and all the best in the New Year. We will update you on APERSU’s activities in June.

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

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

APERSU held its 5th Annual End-User Meeting on October 17 and 18, 2019, at the Coast Canmore Hotel and Conference Centre in Canmore, Alberta. We hosted delegates from across Canada, the United States, the Netherlands, Sweden and the United Kingdom. We were fortunate to have had mild weather for our meeting.

We would like to thank all of our presenters:

• Jeff Johnson (APERSU): Overview and Update on APERSU

• Joanne Greenhalgh (University of Leeds) – Keynote Speaker (University of Leeds): How do patient-reported outcome measures data stimulate health care improvement?

The use of routinely collected PROMs data at the healthcare system level – examples from various clinical areas
• Linda Watson (CancerControl Alberta): Integrating Digital Patient Reported Outcomes (PROs) into Standard Ambulatory Care Processes Provincially: Exploring the outcomes
• Kevin Perera (University of Calgary): Application and Utility of PROMs in the Calgary Epilepsy Program (CEP) database, a large hospital-based registry of epilepsy patients
• Katie Churchill and Linda Warner (Alberta Health Services): Launching into Spread and Scale: Implementing the EQ5D-5L in Community Rehabilitation in Alberta Health Services

PCN Working Group Panel Discussion: The use of PROMs data in Primary Care Settings in Alberta – A panel discussion.
• Chair: Scott Oddie (Alberta Health Services)
• Margo Schmitt-Boshnick (Red Deer Primary Care Network)
• Krista Brower (Edmonton Oliver Primary Care Network)
• Shea Wilks (Palliser Primary Care Network)
• Michel Haener (Grande Prairie Primary Care Network)

Research Trainee Presentations
• Kai-Erh Kao (APERSU Summer Student): The Discriminative Validity of the EQ-5D-5L Pain/Discomfort Dimension in Type 2 Diabetes
• Xuejing (Jennifer) Jin (APERSU): An overview and update on APERSU’s work on Minimally Important Difference (MID)

• Nicole De Guia (Canadian Institute for Health Information): Canadian Institute for Health Information – PROMs Update
• Deborah Dudgeon (Canadian Partnership Against Cancer): Pan-American Implementation of Patient Reported Outcomes at CPAC: Opportunities, Challenges and Lessons Learned
• Markus Lahtinen (Health Quality Council of Alberta [HQCA]): The Future of PROMs Data and Surveying at the HQCA

Leveraging routinely collected PROMs data for policy and economic analysis – a panel discussion.
• Chair: Fatima Al Sayah (APERSU)
• Stafford Dean (Alberta Health Services)
• Sunita Karmakar-Hore (Canadian Institute for Health Information)
• Jeff Round (Institute of Health Economics)

We would also like to thank all attendees.

Links to presentations can be found on our website.

The two-day meeting included a Board of Directors meeting and a Scientific Advisory Committee meeting (both for members only). We thank the members of the Board of Directors and the Scientific Advisory Committee for their service and advice to the APERSU Team.

Plans are in the works for the 6th Annual APERSU End-User Meeting, which will be held in October 2020, at the Peter Lougheed Hall, City Room, University of Alberta Campus, Edmonton. We will update you once a date has been secured.

EMPATHY Trial Update

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

Alberta Kidney Care – North (AKC-N), formerly known as the Northern Alberta Renal Program (NARP), began implementing the EMPATHY trial in 17 dialysis units in September 2018. Data collection concluded in October 2019 and we are excited to begin analyzing the data. Alberta Kidney Care – South (AKC-S), formerly known as the Southern Alberta Renal Program (SARP) began phasing units into the trial in January 2019. Eleven of 12 AKC-S dialysis units have been phased in as of August 2019. The final unit has been delayed in rollout due to WiFi connection issues for electronic PROMs collection. IT is working to resolve the issue quickly so the final unit can be rolled out soon. Ontario Renal Network (ORN) began phasing units into the trial in April 2019. By September 2019, all 15 units were phased in.

Jeff Johnson and Kara Schick-Makaroff 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 implementation of 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). Meghan Elliot is leading a similar study in AKC-S and data collection initiated in June 2019. Patient partner, Bonnie Corradetti, is a co-investigator on this study and is helping with data collection.

Natalie Ilkiw, now the former AKC-S coordinator, gave an oral presentation with patient partner, Bonnie Corradetti, at the Canadian Association of Nephrology Nurses and Technologists (CANNT) Conference in Edmonton on October 26, 2019. Terry Smith-Saunders has taken over Natalie’s role.

As for next steps for the EMPATHY team in AKC-N, we are preparing to submit our study protocol for publication in a scientific journal, we will develop a plan for data analysis, and disseminate our research findings.

For more information on this project, please email Hilary Short (heshort@ualberta.ca).

APERSU PCN Working Group Update

Our PCN Working Group has established a Terms of Reference and started on many initiatives to promote connections and sharing opportunities among PCNs using PROMs. Four of our working group members presented as a panel, at the 5th Annual APERSU End-User meeting. This 90-minute discussion covered current issues and potential solutions to PRO data usage in local Alberta Primary Care Network settings. The participating Working Group members each highlighted current PROMs and/or EQ-5D implementation in their Primary Care Network, as well as past, present and future data usage. It was followed by an open discussion led by Scott Oddie of Alberta Health Services.

The entire presentation and discussion is posted on our website.

Next steps for the PCN Working Group include reaching out to other PCNs and assessing their educational and training needs, as well as tackling some common pitfalls to using their PROMs data.

APERSU is also continuing with one-on-one PCN consultations, aimed to guide and support EQ-5D and PROM implementation to meet local individual PCN needs (e.g. 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

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. Quality of Life Research, 2019; 28(9):2409-2417. PMID: 31089988.

Tawiah A, Al Sayah F, Ohinmaa A, Johnson JA. Discriminative validity of the EQ-5D-5L and SF-12 in older adults with arthritis. Health and Quality of Life Outcomes 2019; 17(1):68. PMID: 30995930.

Jin X, Al Sayah F, Ohinmaa A, Marshall D, Smith C, Johnson JA. The EQ-5D-5L is Superior to the -3L Version in Measuring Health-related Quality of Life in Patients Awaiting Hip or Knee Arthroplasty. Clinical Orthopaedics and Related Research, 2019; 477(7): 1632-1644. PMID: 30801280.

Soprovich A, Ingstrup M, Eurich D. The frequency and availability of population-specific patient reported outcome measures and minimal clinically important differences among approved drugs in Canada. Health and Quality of Life Outcomes 2019;17(1):4. PMID: 30616654.

APERSU Presentations

Wen J, Jin X, Ohinmaa A. Economic Evaluation of Sucrose Octasulfate Dressing for the Treatment of Diabetic Foot Ulcer in Canada. 11th Huaxia Pharmacoeconomics and HTA Forum, Nanjing, China, June 29-30, 2019. [Poster Presentation]

Johnson JA, Al Sayah F, Jin X. Introductory Workshop on Measuring Health-related Quality of Life (HRQL). Half-day workshop at 11th Huaxia Pharmacoeconomics and HTA Forum, Nanjing, China, Jun 30, 2019. [Invited Workshop]

Jin X. (2019). Tips for High Quality Systematic Reviews. Seminar at Nantong University, Nantong, China. Jul 02, 2019. [Invited Talk]

Jin X. (2019). Introduction to Economic Evaluation Methods. Seminar at Beijing University of Chinese Medicine, Beijing, China. Jul 03, 2019. [Invited Talk]

Jin X, McClure N (presenters), Al Sayah F (moderator). Introduction to Minimally important difference – APERSU webinar series, Sept 5, 2019. [Webinar]

Al Sayah F, Lubetkin E, Rey Ares L, Derrett S. A Systematic Review on EQ-5D and Health Inequalities – Preliminary Results. 36th EuroQol Plenary meeting, September 18- 21, 2019, Brussels, Belgium. [Poster Presentation]

Jin X, Al Sayah F, Ohinmaa A, Marshall DA, Johnson JA. What is behind the “mobility” dimension of the EQ-5D? An exploratory analysis in patients following total hip/knee replacement. 36th EuroQol Plenary meeting, September 18- 21, 2019, Brussels, Belgium. [Poster Presentation]

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? Society for Medical Decision Making 41st Annual Meeting, Portland, OR, USA, October 20 - 23, 2019. [Poster Presentation]

Jin X, McClure NS, Al Sayah F, Ohinmaa A, Johnson JA. (2019). Minimally Important Differences for EQ-5D instruments: A Systematic Review of Estimates in Published Literature. 5th Annual APERSU End-User Meeting 2019, Canmore, Canada and 26th Annual Conference of the International Society for Quality of Life Research, San Diego, California, United States, October 20-23, 2019. [Oral Presentation]

Jin X, Al Sayah F, Marshall DA, Ohinmaa A, Johnson JA. (2019). What is behind the “mobility” dimension of the EQ-5D? An exploratory analysis in patients following total hip/knee replacement. 26th Annual Conference of the International Society for Quality of Life Research, San Diego, California, United States. Oct 20-23, 2019. [Poster Presentation]

Short H, Al Sayah F, Ohinmaa A, Johnson JA. Screening for anxiety and depressive symptoms using the EQ-5D-3L post-hospital discharge. ISOQOL 26th Annual Conference, San Diego, California, United States, October 20-23, 2019 and This is Public Health Week, Edmonton, Alberta, Canada, November 4-8, 2019. [Poster Presentation]

McClure NS, Paulden M, Ohinmaa A, Johnson JA. Applying the minimally important difference for health utility scores in the calculation of quality-adjusted life years. This is Public Health Week, Edmonton, Alberta, Canada, November 4 - 8, 2019. [Oral Presentation]

Al Sayah F, Jin X, Wen J, Round J, Paulden M, Ohinmaa A, Johnson JA. Developing a Health State Utilities Atlas using routinely collected EQ-5D data in Alberta for use in Economic Evaluations. 2019 Alberta Health Economic Study Group meeting, Edmonton, Alberta, Canada. November 4-5, 2019. [Poster Presentation]

Soprovich A, and Al Sayah F. Patient-Reported Outcomes (PROs) in Primary Care Research: An introduction to various applications and analyses. 47th North American Primary Care Research Group (NAPCRG) annual meeting, Toronto, Ontario, Canada, November 16-20, 2019. [Oral Presentation]

On the Social Side

Congratulations to Nathan McClure on his engagement to Lindsay McInnes.

Upcoming Events

6th Annual APERSU End-User Meeting

October 2020

Peter Lougheed Hall

University of Alberta Campus

Edmonton, AB

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