APERSU Newsletter -- Volume 5, Issue 1
Summer 2020

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 during these unprecedented times. The APERSU Team has all been working from home since the pandemic started in mid-March. Thankfully, everyone on our team has stayed safe and healthy to date.

Some members of the APERSU Team travelled to a EuroQol Academy Meeting in Prague, Czech Republic just prior to the worldwide shut down. Prior to the EuroQol Academy meeting, our trainees/junior researchers attended the 1st EuroQol Early Career Researchers Meeting, also in Prague.

Unfortunately, due to the pandemic, all other conferences our team was planning on attending have been cancelled including the EuroQol Annual Plenary which was to be held in Chicago, Illinois, in September.

We have decided not to have our annual APERSU End-User face to face meeting this October because of the uncertainty around the pandemic. Plans for online forums in the place of the face to face meeting are in the works and we will send out more information later this summer.

We had an APERSU Board of Directors Meeting in March, with the next meeting taking place on Friday, October 16, 2020. The APERSU Scientific Advisory Committee will also be held in October, date to be determined. These meetings will take place either by teleconference or an online platform, to be determined.

Our APERSU Scientific Advisory Committee welcomes a new member, Dr. Kerry McBrien. Kerry is a family physician in the Calgary Region with experience in primary care. We would like to thank Scott Oddie, former chair of the APERSU Scientific Advisory Committee, for his service and guidance on the committee.

We will be saying goodbye to Xuejing (Jennifer) Jin in June. Jennifer has decided to move back to her home country, where she has accepted a faculty position in the Centre of Evidence-based Medicine, School of Medicine, Beijing University of Chinese Medicine in Beijing. Jennifer started with us as a post-doctoral fellow in July 2017 and recently transitioned to a Research Associate, supporting our research in APERSU. We are sad to see Jennifer go but wish her all the very best with her move and her new position. We do anticipate ongoing collaborations with Jennifer in her new position in Beijing.

Congratulations to Nathan McClure who successfully defended his PhD Thesis on Wednesday, June 3. Nathan was our first student to complete his oral exam virtually because of the COVID-19 shutdown. Great job Nathan!

We are happy to report that Alberta Health Services (AHS) has extended APERSU’s operational funding to 2025. We were successful in obtaining funding from the EuroQol Research Foundation on two projects; one is a knowledge translation project to disseminate key messages on the use of the EQ-5D for routine outcome measurement in health systems and the other is a joint venture with HQCA on the impact of COVID-19 on health status of adults visiting emergency departments and primary care clinics in Alberta. We are grateful to both AHS and EuroQol Research Foundation for their funding.

On behalf of the APERSU Team, I 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 and most importantly, stay safe and healthy! We will update you on APERSU’s activities in December.

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.

EMPATHY Trial Update

Our work on the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) Trial is continuing to progress, despite the interruption due to the COVID-19 pandemic. We are continuing to work on some aspects of the project, while others are on hold for the moment.
Alberta Kidney Care – North (AKC-N), formerly known as the Northern Alberta Renal Program (NARP), completed the 1-year trial period in 17 dialysis units in October 2019. Following the completion of the EMPATHY trial period, AKC-N re-implemented a Supportive Care program in all hemodialysis units, such that ESAS-r:Renal surveys are collected from patients at 2-month intervals. The report cards generate through the nephrology information system (NIS) continue to be available, as are the treatment aids for providers and patients that were developed for the study. This new supportive care model is essentially the same as study arm 1 of the EMPATHY trial. With all units implementing the same intervention, the research team is conducting a “post-trial assessment” to capture the post-EMPATHY effect across all the units, notably in the units in the control arm, and examine if the previously assessed outcome and experience measures are stable post-study. Alberta Kidney Care – South (AKC-S), formerly known as the Southern Alberta Renal Program (SARP), began phasing 12 units into the trial in January 2019 and the Ontario Renal Network (ORN) began phasing 15 units into the trial in April 2019. However, collection of PROMs data in AKC-S and the ORN has been interrupted by the pandemic for now, but we are intending to continue data collection until later this year.

We are currently undertaking analysis of qualitative data for a sub-study led by Kara Schick-Makaroff and Jeff Johnson, to evaluate the EMPATHY intervention in AKC-N. Data collection for this study concluded in November 2019, where the team conducted unit observations, interviewed patients and nurses, reviewed patients’ open-ended survey comments on improving their care, and conducted a content analysis of nurses’ chart notes. The team is currently working on a mixed methods secondary analysis of the burden of mental health symptoms and perceptions of their management in hemodialysis care.

Meghan Elliot is leading a similar qualitative study in AKC-S where data collection was initiated in June 2019. Meghan’s team collected two-thirds of their data prior to interruption by the pandemic. They are analyzing the data they have so far and will hopefully be able to pick up where they left off later this year.

As for next steps for the EMPATHY team, we are preparing to submit our study protocol for publication in a scientific journal and we will develop a plan for the continuation of EMPATHY in AKC-S and the ORN depending on the duration of the pandemic situation across the country.

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

APERSU PCN Working Group Update

Our PCN Working Group met earlier this winter to discuss possible networking opportunities to reach out to other PCNs and committees/groups. We opened up dialogue with others around the province about implementing PROMs in primary care, specifically around capturing data electronically. Recently, with the COVID-19 context, health care practices have shifted and primary care is still juggling many priorities and changes. APERSU continues to support primary care where possible and our next working group meeting is planned for June.

Next steps for the PCN Working Group include continuing to reach out to other PCNs and groups, to assess their educational and training needs and foster collaborations. Building upon the development of remote/virtual patients visits, we are discussing ways to integrate electronic data collection of PROMs into patient care and population health.

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 (i.e. data management, implementation logistics, etc.). If you would like more information or to book a consultation, please contact Allison Soprovich (allison.soprovich@ualberta.ca).

APERSU Webinars

Al Sayah F. How can we use routinely collected PROMs data to support decision making within the healthcare system? APERSU Webinar Series, March 27, 2020.

Churchill K and Keogh E. The Use of Routinely Collected PROMs Data in Community Rehabilitation in Alberta. APERSU Webinar Series, May 28, 2020.

APERSU Presentations

Wen J, Jin X, Al Sayah F, Short H, Ohinmaa A, Johnson JA. Mapping the Modified Edmonton Symptom Assessment System - Renal onto EQ-5D-5L in patients with chronic kidney disease. 1st EuroQol Early Career Researchers Meeting 2020, Prague, Czech Republic. March 1, 2020.

Jin X, McClure NS, Al Sayah F, Ohinmaa A, Johnson JA. Minimally Important Differences for EQ-5D instruments: A Systematic Review of Estimates in Published Literature. 4th EuroQol Academy Meeting 2020, Prague, Czech Republic. March 2-4, 2020.
Poster

Jin X, Al Sayah F, Ohinmaa A, Johnson JA. Estimating minimally important difference of the EQ-5D-3L and -5L in patients following total hip or knee replacement: An exploratory analysis of a novel approach using the ‘misery’ index. 1st EuroQol Early Career Researchers Meeting 2020, Prague, Czech Republic. March 1, 2020.

McClure NS, Xie F, Johnson JA. Unpacking small differences in EQ-5D-5L health utility scores: Are you better, worse or the same? Poster presented at the 4th EuroQol Academy Meeting, Prague, Czech Republic, March 2-4, 2020.

Congratulations

Congratulations to Nathan McClure on completion of his PhD Oral Exam. Great work Nathan!

Upcoming Events

APERSU Online Forums

November, 2020 (Exact dates TBD)

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