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APERSU Newsletter -- Volume 2, Issue 2
Winter 2017

Report from Co-Directors
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Arto Ohinmaa

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 has traveled quite a bit this fall related to our research program; first to Barcelona for the Annual EuroQol Plenary meeting in September and to Philadelphia for the ISOQOL 24th Annual Conference in October.

We held our 3rd Annual APERSU End-User Meeting on November 15 and 16, 2017, at the Coast Canmore Hotel and Conference Centre in Canmore. We had a good turn out for the meeting and a lot of fantastic presentations. We were very pleased to have Dr. Chris Gibbons as our Keynote Speaker for this event presenting “More than a tick-box exercise: Leveraging modern technology to realise the potential of PROs in clinical practice”. All presentations were well received; we appreciate everyone taking time in their busy schedules to attend the meeting and special thanks to all that presented. You will be able to find most presentations on our website. See the article below for more details on the meeting.

As part of the 3rd Annual APERSU End-User Meeting, we held a Board of Directors meeting and a Scientific Advisory Committee meeting. Both were very constructive and valuable for the APERSU team. We are very fortunate to have these two entities to guide us strategically guiding our services and research agenda. Please note one change on the Scientific Advisory Committee, Doug Dover has moved on from Alberta Health. In his place, we welcome Erin Kirwin as the representative from Alberta Health. Thank you to Doug for his service and welcome to Erin!

We are looking ahead to the 4th Annual APERSU End-User Meeting, which will be held next fall; the exact date and location will be announced on our website in the new year.

The Evaulation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY) Trial is picking up steam, with an anticipated trial start date in April, 2018 within the Northern Alberta Renal Program (NARP). A decision to split the EMPATHY trial into three separate studies was made due to different stages of readiness to implement the trial within the three targeted renal programs: NARP, Southern Alberta Renal Program (SARP), and the Ontario Renal Network (ORN). Collaborations with the NARP nephrology information system to collect and report trial data have been finalized, and PROM results will be reported to clinicians through a symbolized report. Before wrapping up for the holidays, we plan to pilot our survey, finalize our anxiety and depression treatment aids and patient handouts, and apply for ethics approval. An application was submitted to CIHR for the Catalyst Grant in June and we also anxiously await the funding decision announcement on December 18, 2017.

Come spring, we will be looking for graduate summer students. We plan to have the positions posted on our website by March. Please let us know if you are interested or if you have a student interested in assisting with APERSU projects over the summer.

On behalf of the APERSU Team, I want to take this opportunity to wish you all a very Merry Christmas and all the best in the year ahead. We will update you on APERSU’s activities next summer.

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.
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3rd Annual APERSU End-User Meeting

APERSU held its 3rd Annual End-User Meeting on November 15 and 16, 2017 at the Coast Canmore Hotel and Conference Centre. The meeting was well received. We hosted delegates from across Canada, United States, The Netherlands and the United Kingdom. It was fortunate to have some mild weather, much warmer than the forecasted temperatures.

We would like to thank all of our presenters; they are as follows:

▪ Chris Gibbons (Keynote Speaker) – More than a tick-box exercise: Leveraging modern technology to realise the potential of PROs in clinical practice
▪ David Parkin – PROMs in the NHS - England
▪ Ellis Chow – Routine PROMs Measurement in Health System – CIHI Update
▪ Andrea Deiure and Olga Maciejewski – Implementing PROMs & PREMs in CancerControl Alberta
▪ Colin Josephson – EQ-5D variations in a large, hospital-based registry of epilepsy patients
▪ Tova Leveille – Self-Reported Quality of Life Among Patients living with COPD: Feasibility & Preliminary Results
▪ Roland Simon – EQ-5D Measurement at HQCA
▪ Deborah Marshall – Validating the EQ5DY in Juvenile Idiopathic Arthritis (JIA) in UCAN CANDU
▪ Judith Krajnak – Using EQ-5D as One Measure to Study Program Outcomes for a Self-Management Program: Using Results to Engage Staff
▪ Nick Bansback – Bringing Patients back to the PROM
▪ Lara Russell – The stories they tell: Findings from a side-by-side comparison of two generic PROMs, the EQ-5D-5L and the VR-12
▪ Lara Russell (on behalf of Rick Sawatsky) – VR-12 adaptation for long-term residential care
▪ Student Presentations
▪ Tahmid Kashem – Relationship of Deprivation with Health-Related Quality of Life (HRQOL) in General Population
▪ Andrews Tawiah – Discriminative Validity of the EQ-5D-5L and SF-12 in Older Adults with Arthritis
▪ Fatima Al Sayah (on behalf of Xuejing [Jennifer] Jin) – A comparison of cross-sectional psychometric properties of EQ-5D-3L and EQ-5D-5L among patients who received hip and knee replacements
▪ Chris Gibbons (Keynote Speaker) – More than a tick-box exercise: Leveraging modern technology to realise the potential of PROs in clinical practice
▪ David Parkin – PROMs in the NHS - England
▪ Ellis Chow – Routine PROMs Measurement in Health System – CIHI Update
▪ Andrea Deiure and Olga Maciejewski – Implementing PROMs & PREMs in CancerControl Alberta
▪ Colin Josephson – EQ-5D variations in a large, hospital-based registry of epilepsy patients
▪ Tova Leveille – Self-Reported Quality of Life Among Patients living with COPD: Feasibility & Preliminary Results
▪ Roland Simon – EQ-5D Measurement at HQCA
▪ Deborah Marshall – Validating the EQ5DY in Juvenile Idiopathic Arthritis (JIA) in UCAN CANDU
▪ Judith Krajnak – Using EQ-5D as One Measure to Study Program Outcomes for a Self-Management Program: Using Results to Engage Staff
▪ Nick Bansback – Bringing Patients back to the PROM
▪ Lara Russell – The stories they tell: Findings from a side-by-side comparison of two generic PROMs, the EQ-5D-5L and the VR-12
▪ Lara Russell (on behalf of Rick Sawatsky) – VR-12 adaptation for long-term residential care
▪ Student Presentations
▪ Tahmid Kashem – Relationship of Deprivation with Health-Related Quality of Life (HRQOL) in General Population
▪ Andrews Tawiah – Discriminative Validity of the EQ-5D-5L and SF-12 in Older Adults with Arthritis
▪ Fatima Al Sayah (on behalf of Xuejing [Jennifer] Jin) – A comparison of cross-sectional psychometric properties of EQ-5D-3L and EQ-5D-5L among patients who received hip and knee replacements

We would also like to thank all attendees.

The two-day meeting included a Board of Directors meeting and a Scientific Advisory Committee meeting. We welcomed a new member to the Scientific Advisory Committee, Erin Kirwin. Erin is replacing Doug Dover, who previously represented Alberta Health. We would like to thank the members of both the Board of Directors and the Scientific Advisory Committee for their continued valuable service and advice to the APERSU Team.

Plans are in the works for the 4th Annual APERSU End-User Meeting to be held in fall 2018. Specific dates and details will be determined in the near future.
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Meet the Post-Doctoral Fellow - Xuejing "Jennifer" Jin

Training Program: Post Doctoral Fellow, Alberta PROMS and EQ-5D Research and Support Unit, School of Public Health, University of Alberta

Jennifer was born and raised in Hebei, China. She got a Bachelor of Economics degree in 2010 and an MSc degree in Pharmacoeconomics in 2013 from China Pharmaceutical University. Jennifer moved to Canada for her doctoral study in fall 2013 and graduated from the Department of Health Research Methods, Evidence, and Impact (formerly "Department of Clinical Epidemiology and Biostatistics") at McMaster University in summer 2017 with a PhD degree in health research methodology (health technology assessment field). Her PhD thesis is “Measurement of Quality of Life of Patients with Type 2 Diabetes in China.”

Jennifer is now working as a postdoctoral fellow at APERSU. Her research projects focus on comparing and exploring the measurement properties and performance of the two version of EQ-5D against other measures and generating evidence on how to interpret the EQ-5D scores using the minimally important difference approach in the Canadian setting.

Outside of work, Jennifer enjoys traveling and dancing.

APERSU Publications

Al Sayah F, Xie F, Qiu W, Johnson JA. Comparative Performance of the EQ-5D-5L and SF-6D Index Scores in Adults with Type 2 Diabetes. Quality of Life Research 2017;26(8):2057-2066.

APERSU Presentations

McClure NS. Health-related quality of life and a minimally important difference. (Oral Presentation). Summer Institute 2017, A Spotlight on Patient-Oriented Research, Canada June 26, 2017, Edmonton, AB.

McClure NS, Al Sayah F, Johnson JA. Interpretation of health-related quality of life scores using estimates of the minimally important difference. (Poster Presentation). Summer Institute 2017, A Spotlight on Patient-Oriented Research, Canada June 26, 2017, Edmonton, AB.

Al Sayah F, Crick K, Ohinmaa A, Johnson JA. How well does the anxiety/depression dimension of the EQ-5D-3L and 5L perform in assessing changes in mental health. Janssen Pharmaceuticals PROs team. August 21, 2017. https://apersu.ca/wp-content/uploads/2017/08/EQ-5D-mental-health_Janssen-Pharm-presentation.pdf

Short H, Al Sayah F, Ohinmaa A, Johnson JA. The relationship of material and social deprivation with health status. (Poster Presentation). The 2017 Scientific EuroQol Plenary Meeting, September 21-23, 2017, Barcelona, Spain.

McClure NS. A webinar on the minimally important difference. (Oral Presentation) International Society for Pharmacoeconomics, University of Illinois at Chicago, Student Chapter, United States September 22, 2017, Chicago, IL, United States.

Huffman S, Al Sayah F, Ohinmaa A, Johnson JA. What does the “usual activities” dimension of the EQ-5D measure? ISOQOL 24th Annual International Meeting, October 18-21, 2017, Philadelphia, PA, United States. Quality Life Research 2017;26: Suppl. 1:(A2035):90.

Short H, Al Sayah F, Ohinmaa A, Johnson JA. The relationship of material and social deprivation with health status. (Poster presentation). 24th Annual Conference of the International Society for Quality of Life Research, October 18-21, 2017, Philadelphia, United States. Quality of Life Research 2017; 26: Suppl. 1:(A2064):109.

Al Sayah F, Ohinmaa A, Johnson JA. (Workshop) Patient-reported outcome measures (PROMs): Value of health from the individual’s perspective. Insights, School of Public Health, University of Alberta, Nov 2, 2017, Edmonton, AB

Kashem T, Al Sayah F, Ohinmaa A, Johnson JA. Relationship of Deprivation with Health-related Quality of life (HRQOL) in General Population. [Oral presentation]. Insights, School of Public Health, University of Alberta, Nov 2, 2017, Edmonton, AB.

McClure NS, Zhao H, Eurich D, Johnson JA. Healthcare utilization and health-related quality of life of adults living with type 2 diabetes in Alberta (Oral Presentation) INSIGHTS: Focus on Public Health, Canada November 2, 2017, Edmonton, AB.

Tawiah A, Al Sayah F, Ohinmaa A, Johnson JA. Discriminative Validity of the EQ-5D-5L and SF-12 in Older Adults with Arthritis. [Oral presentation] Insights, School of Public Health, University of Alberta, Nov 2, 2017, Edmonton, AB.

Al Sayah F, Leischner R, Oddie S, Markin A, Ohinmaa A. (Workshop) Putting Patients at the Centre of Health Care: The use of PROMs in Primary Care Networks. Accelerating Primary Care Conference, Nov 17-18, 2017, Calgary, AB.

McClure NS, Al Sayah F, Ohinmaa A, Johnson JA. Discussion Paper: Minimally important differences for preference-based measures of health-related quality of life: The state of the debate and a look forward. Alberta Health Economics Study Group, Canada November 21, 2017.

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
 

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