Alberta PROMs & EQ-5D Research & Support Unit (APERSU): A Brief Introduction Dr. Jeff Johnson January 30, 2016
Faculty/Presenter Disclosure Faculty: Jeff Johnson Relationships with commercial interests: I have no relationships with commercial interests to declare. Relationships with non-commercial interests: I am a member of the Board of Directors for the EuroQol Research Foundation, a not-for-profit organization.
Disclosure of Commercial Support This program has received no financial support. Potential for conflict(s) of interest: No potential conflict of interest; there is no fee to use the EQ-5D instruments by non-commercial organizations, such as PCNs.
Outline About APERSU Vision Agreements & Partnerships Objectives Organizational structure & team Board of Directors Scientific Advisory Committee Services Collaborations & Data Sharing Research Priorities Working with APERSU Why do you want to use the EQ-5D (PROM)? Which EQ-5D instrument (PROM) is best fit for your purpose? How to obtain EQ-5D instruments (registration with the EuroQol Foundation)? How to collect data? (paper-based, web etc ) How to manage data? (database, REDCap, EMR etc..) How to analyze data? How to report/use results?
APERSU Vision To improve decisions by end-users and stakeholders about health and health care in Alberta by promoting, coordinating, and supporting the use of PROMs including the EQ-5D for the measurement and valuation of health.
APERSU Agreements & Partnerships EuroQol Research Foundation HQCA Master Licensing Agreement EQ Foundation & U of A Use of instruments/version Research Agenda Data sharing Sub-licensing to end-users AHS Funding Agreements APERSU Structure BoD, SAC Sub-licensing to end-users Data-sharing Service/Support APERSU SPH, UofA End-user Agreements U of A & non-commercial end-users Data-sharing Service/Support Various Alberta-based End-users
EuroQol Group Established in 1987, the EuroQol Group first met to test the feasibility of jointly developing a standardized, nondisease specific instrument for describing and valuing health-related quality of life. Vision: To improve decisions about health and health care throughout the world by developing, promoting and supporting the use of instruments with the widest possible applicability for the measurement and valuation of health.
EuroQol Group Organizational Structure EQ Group EQ Research Foundation - EQ Research Foundation manages funds from sponsored use of EQ-5D instruments by commercial users, to, in turn, support research and development activities by EQ Group members
APERSU Organizational Structure Board of Directors Scientific Advisory Committee Research Manager Jeffrey A. Johnson, PhD Professor School of Public Health University of Alberta Fatima Al Sayah, PhD Research Associate School of Public Health University of Alberta Co-Directors Research Staff Positions open! (Graduate Students, Post-doctoral Fellows) Arto Ohinmaa, PhD Professor School of Public Health University of Alberta Research Administrator Sherry Lydynuik School of Public Health University of Alberta
APERSU Board of Directors (BoD) Stafford Dean, PhD [chair] Senior Program Officer Analytics Alberta Health Services Charlene McBrien-Morrison Executive Director Health Quality Council of Alberta Tania Bubela, JD, PhD, BSc Professor and Associate Dean (Research) School of Public Health Alberta School of Business University of Alberta A. Simon Pickard, PhD Professor College of Pharmacy University of Illinois at Chicago Executive Committee Chair, EuroQol Research Group Purpose: The Board of Directors (BoD) provides organizational and operational strategic direction to the co-directors, and monitors the performance of APERSU
APERSU Scientific Advisory Committee (SAC) Nancy Devlin, PhD [Chair] Professor Department of Economics, City University, London, UK Director of Research, Institute of Health Economics, UK Gouke J. Bonsel, PhD Professor Urasmus, Netherlands Chair of Large Scale applications working group, EuroQol Foundation Richard Sawatzky, RN, PhD Canada Research Chair in Patient Reported Outcomes, Associate Professor of Nursing Trinity Western University Tim Cooke, PhD Senior Health System Analytical Lead Health Quality Council of Alberta Markus Lahtinen, PhD Measurement Team Lead Health Quality Council of Alberta Brandi McCormack Director, Outcome Measurement & Strategic Initiatives Alberta Health Services Scott Oddie, PhD Director of Measurement and Knowledge Integration, Alberta Health Services Adjunct Associate Professor, Faculty of Social Sciences, Department of Psychology, University of Calgary Deborah Marshall, PhD, MHSA Professor University of Calgary and Arthur J.E. Child Chair of Rheumatology Outcomes Research in the McCaig Institute of Bone and Joint Health Larry Svenson Director, Surveillance and Assessment Branch Alberta Ministry of Health Purpose: The Scientific Advisory Committee (SAC) provides advice and direction to Alberta PROMs & EQ-5D Research & Support Unit (APERSU) Co-Directors regarding APERSU s research agenda and activities
APERSU Objectives 1. Provide expertise, advice and support for the application of the various EQ-5D instruments and other PROMs by provincial endusers, including advice on versions, measurement, scoring and analysis of data collected with the EQ-5D. 2. Provide oversight and coordination of various non-commercial applications of the EQ-5D instruments in Alberta. 3. To register and license all EQ-5D applications under the agreement in Alberta with the Foundation; to serve as a liaison between Alberta-based end-users and the Foundation. 4. Facilitate collaborative research among EQ Group members, and where applicable, with Alberta end-users working with EQ-5D data in the context of large scale health applications.
Objectives (cont d) 5. Develop an innovative research agenda building on the collaboration and end-user agreements in the province, including the novel use of large sets of EQ-5D and PROMs data, as well as testing innovative methods for collection, analysis and use of PROMs data from large-scale health applications in Alberta. 5. Generate information for population health and economic modeling studies to support health policy. 6. Organize an annual research meeting for Albertan, and selected Canadian, EQ-5D end-users to disseminate and share methods, applications and results between stakeholders.
APERSU Services Basic Services Registering and licensing the use of EQ-5D instruments. Providing training, guidance, and support to end-users on the use of PROMs including the EQ-5D. EQ-5D data cleaning and scoring, and report of basic descriptive data analysis. Additional Services Additional support and advice for more advanced analyses such as statistical comparisons, or economic evaluations will be undertaken on a cost recovery basis ($500/day), and would be the based on a separate partnership/funding agreement between the parties.
APERSU Principles of Collaborations 1. Research collaborations are important, and encouraged, between the Foundation, APERSU, Sponsors and various Alberta-based End-users (including Alberta-based sponsors). 2. Many applications of the EQ-5D by End-users, such as in routine outcome measurement and health care delivery planning, will not, by itself, constitute research. 3. Nonetheless, from time-to-time, End-users may be invited to collaborate with APERSU pursuant to an approved research study, which may include sharing limited data elements from their applications of the EQ-5D. 4. These collaborations will be subject to separate data sharing agreements, which shall include provisions that such data, which is contributed to APERSU, must be freely shareable with all Parties. 5. In order to guarantee the coherence of the research endeavors of the Foundation, the Executive Committee of the EuroQol Group will sign off on the structure and content of the research program prior to the start of the first research study. Any changes to the research program must be discussed and agreed with the Executive Committee before deployment. 6. The principal investigator(s) of research studies funded under the APERSU Collaboration Agreement must be a EuroQol Group member based in Alberta. This does not preclude the possibility that researchers (both EuroQol Group members and non-members) based outside Alberta, Canada may participate in these studies.
APERSU Research Priorities Applications of PROMs in clinical practice Applications of PROMs in health systems Understanding the instrument better Enhancing Quality of PROMs Use
Working with APERSU Why do you want to use the EQ-5D (PROM)? Which EQ-5D instrument (PROM) is best fit for your purpose? How to obtain EQ-5D instruments (registration with the EuroQol Foundation)? How to collect data? (paper-based, web etc ) How to manage data? (database, REDCap, EMR etc..) How to analyze data? How to report/use results? PROMs PREMs Canadian Norms Decision aids EQ-5D registration Clinical use Value set
Why do you want to use the EQ-5D (PROM)? Program evaluation Routine outcome measurement Effectiveness of interventions clinical effectiveness Economic evaluation cost-effectiveness Others Important considerations: Population (general, patients, age group, language, etc ) Cross-sectional vs. longitudinal Other data to collect with EQ-5D (or PROM)
Which EQ-5D instrument is better fit for your purpose? EQ-5D-3L Descriptive system: 5 dimensions; 3 levels Visual analogue scale (VAS) EQ-5D-5L Descriptive system: 5 dimensions; 5 levels Visual analogue scale (VAS) EQ-5D-Y Descriptive system: 5 dimensions; 3 levels Visual analogue scale (VAS)
EQ-5D-3L EQ-5D-5L EQ-5D-Y Mobility (walking about) Mobility Self-Care Usual Activities Pain/ Discomfort Anxiety Depression I have no problems in walking I have some problems in walking I am confined to bed I have no problems washing or dressing myself I have some problems washing or dressing myself I am unable to wash or dress myself I have no problems doing my usual activities I have some problems doing my usual activities I am unable to do my usual activities I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed I have no problems in walking I have slight problems in walking I have moderate problems in walking I have severe problems in walking I am unable to walk I have no problems washing or dressing myself I have slight problems washing or dressing myself I have moderate problems washing or dressing myself I have severe problems washing or dressing myself I am unable to wash or dress myself I have no problems doing my usual activities I have slight problems doing my usual activities I have moderate problems doing my usual activities I have severe problems doing my usual activities I am unable to do my usual activities I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort I am not anxious or depressed I am slightly anxious or depressed I am moderately anxious or depressed I am severely anxious or depressed I am extremely anxious or depressed I have no problems walking about I have some problems walking about I have a lot of problems walking about Looking after myself I have no problems washing or dressing myself I have some problems washing or dressing myself I have a lot of problems washing or dressing myself Doing Usual Activities (for example, going to school, hobbies, sports, playing, doing things with family or friends) I have no problems doing my usual activities I have some problems doing my usual activities I have a lot of problems doing my usual activities Having pain or discomfort I have no pain or discomfort I have some pain or discomfort I have a lot pain or discomfort Feeling worried, sad or unhappy I am not worried, sad or unhappy I am a bit worried, sad or unhappy I am very worried, sad or unhappy 243 health states 3125 health states
How to obtain the EQ-5D? Registration with the EuroQol Foundation End-user license Issued by APERSU Term: 3 years No fees
How to collect data? Modes of data collection: Paper-based Web-based Devices tablets, smartphones Instrument administration: Self-administered Clinician/researcher administered Telephone administered
How to manage data? Develop a database Use EMR or other existing databases Use REDCap Edmonton: https://redcap.med.ualberta.ca/ Calgary: http://cru.ucalgary.ca/services/redcap/
How to analyze data? Dimensions (proportion of individuals reporting problems in each dimension) Index score: Scoring algorithm, interpretation (MID) EQ-VAS
EQ-5D-5L (Descriptive System) Mobility Self-Care Usual Activities Pain/ Discomfort Anxiety Depression I have no problems in walking I have slight problems in walking I have moderate problems in walking I have severe problems in walking I am unable to walk I have no problems washing or dressing myself I have slight problems washing or dressing myself I have moderate problems washing or dressing myself I have severe problems washing or dressing myself I am unable to wash or dress myself I have no problems doing my usual activities I have slight problems doing my usual activities I have moderate problems doing my usual activities I have severe problems doing my usual activities I am unable to do my usual activities I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort I am not anxious or depressed I am slightly anxious or depressed I am moderately anxious or depressed I am severely anxious or depressed I am extremely anxious or depressed Levels of perceived problems are coded as follows 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 Level = 2 Level = 1 Level = 1 Level = 3 Level = 4 Health state 21134 Scoring (Canadian Algorithm) Health state 21134 EQ-5D-5L index score = 1.1351-0.0389*MO -0.0458*SC -0.0195*UA -0.0444*PD -0.0376*AD -0.0510*(MO45) -0.0584*(SC45) -0.1103*(UA45) -0.1409*(PD45) -0.1277*(AD45) +0.0085*Num45sq EQ-5D-5L index score = 1.1351-0.0389*2-0.0458*1-0.0195*1-0.0444*3-0.0376*4-0.0510*0-0.0584*0-0.1103*0-0.1409*0-0.1277*1 +0.0085*1 2 = 0.5892
EQ-Visual Analogue Scale (VAS) We would like to know how good or bad your health is TODAY. This scale is numbered from 0 to 100. 100 means the best health you can imagine. 0 means the worst health you can imagine. Mark an X on the scale to indicate how your health is TODAY. Now, please write the number you marked on the scale in the box below. Your Health today = 95 The best health you can imagine The worst health you can imagine 100 95 90 85 80 75 70 65 60 55 50 45 40 35 30 25 20 15 10 5 0
How to report/use results? Depends on your: Purpose Audience EQ-5D Data Presence or level of problems by dimension Index score EQ-VAS data
Percentage of respondents by EQ-5D-5L dimension and age group, Alberta (2014) http://hqca.ca/studies-and-reviews/health-outcomes-measurement/
Counts of respondents reporting no problems versus problems by EQ-5D-5L dimension and age group, Alberta (2014) http://hqca.ca/studies-and-reviews/health-outcomes-measurement/
Insert APERSU logo here Percentage of respondents reporting problems by EQ-5D-5L dimension and age, Alberta (2014) http://hqca.ca/studies-and-reviews/health-outcomes-measurement/
Alberta Provincial Norms for EQ-5D-3L; 2013 http://hqca.ca/studies-and-reviews/health-outcomes-measurement/
Histogram of EQ-VAS scores for Alberta, (2014) http://hqca.ca/studies-and-reviews/health-outcomes-measurement/
EQ-5D & QALYs A quality-adjusted life-year (QALY) takes into account both the quantity and quality of life. Simple calculation: (number of years added)*(quality weight) EQ-5D index scores are used to calculate QALYs Healthy = 1.0 State i = 0.65 Dead = 0 0 0.65 X 8 years = 5.2 QALYs 8 Time (yr) QALYs are used in cost-utility analysis Ratio of incremental costs over incremental QALYs cost (A) cost (B) / QALY (A) QALY (B) QALYs provide a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health related quality of life and survival for the patient.
Contact us Located at: 2-040 Li Ka Shing Centre for Health Research Innovation, University of Alberta Email: apersu@ualberta.ca Phone: 780-248-1010 Website: www.apersu.ca coming soon!