1. Patient decision aids: why, what, how, where? Dawn Stacey RN, PhD Research Chair in Knowledge Translation to Patients Full Professor, School of Nursing Director of the Patient Decision Aids Research Group Scientist, Ottawa Hospital Research Institute October, 2014

2.  Think about a health decision that you or someone you know will make over the next year

3. SURE Test ©2008 O’Connor & Legare Thinking about that health decision…

4. Evolution of health information < 1990: –healthcare professionals were gate keepers to information 1990: www –passive viewing of information 2004: Web 2.0 –allows users to interact with each other and contribute to website's content (e.g. social networking, wikis, video-sharing, blogs) 2010: open access to publications of studies receiving public funds

5. USA: R. 3590 The Patient Protection and Affordable Care Act (March 2010)

6. Outline Shared decision making (SDM) Patient decision aids –What are they? –How do they work? –What is a high quality one? Examples of patient decision aids

7. Shared decision making A process by which a healthcare choice is made between the patient and one or more health professionals (Legare et al., 2010; Makoul et al. 2006; Stacey et al. 2011) The crux of patient centred care

8. Shared decision making A process by which a healthcare choice is made between the patient and one or more health professionals (Legare et al., 2010; Makoul et al. 2006)

9. Shared decision making A process by which a healthcare choice is made between the patient and one or more health professionals (Legare et al., 2010; Makoul et al. 2006; Politi et al., 2013) Deliberation Determination

10. Improve o quality of life o sense of control over illness o symptom relief Decrease o fatigue o depression o illness concerns However, most patients would prefer more active involvement Patients involved in decision making… ( Kiesler & Auerbach 2006; Hibbard & Greene 2013)

11. Shared decision making A process by which a healthcare choice is made between the patient and one or more health professionals (Couet et al 2014) SDM is NOT happening in clinical practice 33 Studies mean score 23 ± 14 (range 0 to 100)

12. Outline Shared decision making (SDM) Patient decision aids –What are they? –How do they work? –What is a high quality one? Examples of patient decision aids

13. Inform Provide facts Condition, options, benefits, harms Communicate probabilities Clarify values Ask which benefits/harms matters most Share patient experiences Facilitate communication Support Guide in steps in deliberation/communication Worksheets, list of questions Patient Decision Aids adjuncts to counseling (Stacey et al., Cochrane Library, 2014)

14. Formats for patient decision aids (used prior to or within consultations) 1.Print 2.DVD/Video 3.Online/computer-based (Stacey et al., 2014)

15. 15 Topics of Decision Aids (N=115) Medication (n=36) –10 hormone replacement therapy –3 atrial fibrillation anti-coagulants –3 cardiovascular –3 diabetes –2 osteoporosis –2 chemotherapy –2 breast cancer prevention –2 osteoarthritis knee –hypertension –multiple sclerosis –schizophrenia –depression –natural health products –ovarian risk management –acute respiratory infection –contraceptives –coronary angiogram access site Screening (n=46) –15 Prostate Specific Antigen (PSA) –7 BRCA1/2 genetic –11 colon cancer –6 prenatal –2 mammography –2 diabetes –Colon cancer genetic –Cervix cancer –Stress testing for chest pain Surgery (n=23) –4 mastectomy +1 reconstruction –4 prostatectomy –4 hysterectomy –2 prophylactic BRCA1/2 –2 coronary revascularization –dental –orchiectomy for advanced prostate ca –back –bariatric –vasectomy –long term feeding tube placement Obstetrics (n=6) –2 vaginal birth after cesarean –termination –breech –labour analgesia –embryo transplant Other (n=4) –Hepatitis B vaccine –influenza vaccine –Autologous blood donation –Cystic Fibrosis Transplant Referral (Stacey et al., 2014 Cochrane Review)

16. 16 Patient education vs. decision support (RNAO Best Practice Guideline: Decision Support for CKD, 2009)

17. Outline Shared decision making (SDM) Patient decision aids –What are they? –How do they work? –What is a high quality one? Examples of patient decision aids

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19. Cochrane Review of Patient Decision Aids: updates (Stacey et al., 2014 Cochrane Review)

20. Compared to usual care, PtDAs… Improve decision quality with… 13% higher knowledge 82% more accurate risk perception 51% better match between values & choices 6% reduced decisional conflict Helps undecided to decide (41%) Patients 34% less passive in decisions Improved patient-practitioner communication (8/9 trials) Potential to reduce over-use -20% surgery -14% PSA – prostate screening -27% Hormone replacement tx (Stacey et al., 2014 Cochrane Review)

21. Outline Shared decision making (SDM) Patient decision aids –What are they? –How do they work? –What is a high quality one? Examples of patient decision aids

22. International Patient Decision Aid Standards (IPDAS) Collaboration since 2003 IPDAS Steering Committee: Glyn Elwyn & Dawn Stacey ( Co-Leads), M Barry, N Col, A Coulter, K Eden, M Härter, M Holmes-Rovner, H Llewellyn-Thomas, V Montori, N Moumjid, M Pignone, R Thomson, L Trevena, R Volk, T van der Weijden To enhance the quality and effectiveness of patient decision aids by establishing a shared evidence-informed framework for improving their content, development, implementation, and evaluation. BMC Medical Informatics and Decision Making 2013, 13 (Suppl 2). http://www.biomedcentral.com/bmcmedinformdecismak/supplements/13/S2 http://www.biomedcentral.com/bmcmedinformdecismak/supplements/13/S2

23. Outline Shared decision making (SDM) Patient decision aids –What are they? –How do they work? –What is a high quality one? Examples of patient decision aids

24. http://www.med-decs.org/nl To find decision aids go to…

25. To find decision aids Google: ‘decision aid’

26. Prostate Cancer Knowing Your Options: A Decision Aid for Men With Clinically Localized Prostate Cancer Agency for Healthcare Research and Quality (AHRQ) Localised prostate cancer - low risk Option Grid Collaborative

29. Compared to controls (n=59), those exposed to the decision aid (n=48) had: -higher confidence in their immunization decision -higher intent to be immunized

41. Key Messages Shared decision making is important for patient centred care Patient decision aids prepare patients by: –Making explicit the decision –Providing balanced evidence on options –Asking patients what matters most Evidence supports their effectiveness & quality

42. http://decisionaid.ohri.ca