Engaging Patients in their Own Healthcare Decisions

1. Engaging Patients in their Own Healthcare Decisions Dawn Stacey RN, PhD University Research Chair in Knowledge Translation to Patients Associate Professor,University of Ottawa Scientist and Director of the Patient Decision Aids Research Group, Ottawa Hospital Research Institute TEACH Workshop, New York (August 7, 2013)

2. Objectives • To understand the concept of shared decision making • To be aware of current evidence on interventions for engaging patients in their health decisions • To consider leavers and evidence-based strategies for implementing decision aids in clinical practice

3. Outline • Shared decision making (SDM) • Tools to facilitate SDM • Patient decision aids • Decision coaching • Implementation in practice

4. Shareddecisionmaking A process by which a healthcare choice is made between the patient and one or more health professionals The crux of patient centred care • Facilitated by: • Patient decision aids • Decision coaching (Legare et al., 2010; Makoul & Clayman 2006; Stacey et al. 2011; Weston, 2001)

5. Client Centred Care “Providing care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” (p.6, Institute of Medicine, 2001)

6. Steps in Shared Decision Making (Legare et al., 2010)

8. Patients involved in decision making… • Improve • quality of life • sense of control over illness • symptom relief • Decrease • fatigue • depression • illness concerns • However, most patients would prefer more active involvement (Kiesler & Auerbach 2006, Pt Ed Counsel, 61:319-341)

9. Evidence-based clinical decisions (Guyatt, Haynes, DiCenso from McMaster University) Patient preferences & actions Clinical state, setting, & circumstances Healthcare Professionals Healthcare resources Research evidence 9

10. Outline • Shared decision making (SDM) • Tools to facilitate SDM • Patient decision aids • Decision coaching • Implementation in practice

11. Patient decision aids are third-generation knowledge tools whose purpose is to present knowledge in user-friendly, implementable formats.

12. Knowledge to Action Framework (Graham et al. 2013) Patient Decision Aids

13. Patient Decision Aidsadjuncts to counseling • Inform • Provide facts • Condition, options, benefits, harms • Communicate probabilities • Clarify values • Patient experience • Ask which benefits/harms matters most • Facilitate communication • Support • Guide in steps in deliberation/communication • Worksheets, list of questions

17. Consider which positive and negative features matter most

18. 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

19. To find decision aids GOOGLE: ‘decision aid’

21. Chance of pregnancy by optionThese figures show the chance of pregnancy for 1000 women over 1 year for different contraceptive approaches(1 sperm = 2 people) The Pill Tubal ligation Vasectomy Male Condoms IUD Rhythm method

22. IPDAS presenting probabilities (Elwyn et al., (2006) in BMJ 333(7565):417; Trevena et al. (2006) in J Eval Clin Practice)

23. Cochrane Review of Patient Decision Aids: Update in process D Stacey, C Countemanche, M Barry, C Bennett, N Col, K Eden, M Holmes-Rovner, F Legare, H Llewellyn-Thomas, A Lyddiatt, R Thomson, L Trevena Acknowledgements: A Saarimaki, S Beach, R Wu Funded by University Research Chair in KT to Patients

24. Cochrane Review PtDAs Updates IPDAS Criteria 2005 IPDAS

25. Medical (n=27+8) 10 HRT 3 atrial fib anti-coagulation 2 + 1 cardiovascular (Sheridan) 2+1 diabetes (Mann D) 1 hypertension 1 +1 osteoporosis (Montori) 1 +1 chemotherapy (Leighl) 1 multiple sclerosis 1 schizophrenia 1 depression 1 natural health products 1 ovarian risk management 1 +1 breast caprevention (Fagerlin) 1 +1 osteoarthritis knee (de Achaval) (1) acute respiratory infection (Légaré) (1) contraceptives (Langston) Screening (n=32+14) 12 +4 PSA (Allen, Evans, Myers, Rubel) 7BRCA1/2 genetic 6+5 colon cancer (Lewis, Miller, Schroy, Smith, Steckelberg) 5+1 prenatal (Björklund) 1 colon cagenetic 1+1 mammography (Mathieu2010) 2 diabetes (Mann E, Marteau) 1 cervix ca (McCaffery) Surgical (n=19+6) 4-+1 mastectomy (Jibaja-Weiss)+1 reconstruction 3+1 prostatectomy (Berry) 3+1 hysterectomy (Solberg) 2 prophylactic BRCA1/2 2 dental 2 coronary revascularization 1 orchiectomy for prostate ca 1 circumcision 1 back (1) bariatric (Arterburn) (1) vasectomy (Labrecque) (1) long term feeding tube placement (Hanson) Obstetrics (n=4+2) 2 VBAC 1 termination 1 breech (1) labour analgesia (Raynes-Greenow) (1) embryo transplant (van Peperstraten) Vaccine (n=1+2) 1 infant 1 Hep B (1) influenza (Chambers) Other (n=2) 1 autologous blood donation 1 CF referral for transplant Topics of Decision Aids(N=117)

26. ? ? Taking an Antibiotic or Not? ACUTE RESPIRATORY TRACT INFECTIONS (ARI) INFECTIONS AIGU Ë S DES VOIES RESPIRATOIRES Shared Decision Making Support Tools STEP 3: DIAGNOSTIC PROBABILITY OF BACTERIAL INFECTION Show your patient his/her probability to have a bacterial …………………………............... (Specify the ARI) by illustrating his/her probability and explicitly share the uncertainty associated to this estimate 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Explain the figure adapting to the specific ARI : « On 100 patients who have complaints similar to yours, X have an infection caused by a bacteria and Y have an infection caused by a virus. I cannot tell you if you are in the X or the Y.” Offer additional relevant therapeutic or diagnostic options. Notice: For acute pharyngitis, options are: 1) culture, rapid test or AB if ≥ 50%), 2) culture or rapid test if ≥15%, and 3) neither culture nor rapid test if <15%. STEP 4: BENEFITS AND RISKS OF TAKING AN ANTIBIOTIC OR NOT BENEFITS Explain the figures: « You have 2 options: taking an antibiotic or not taking antibiotic. » Benefits « If 100 patients similar to you don’t take an antibiotic, 70 won’t have…. (define the symptom according to the specific ARI) ….after … days/weeks, and 30 will still have…after … days/weeks. If 100 patients similar to you take an antibiotic, 10 more (in green) won’t have … after …days/weeks. These 10 on 100 are the only one who benefit from taking an antibiotic. » Risks « On the other hand, among the 100 patients similar to you who take an antibiotic, 5 (in brown) will have significant side effects caused by the antibiotic such as diarrhea, stomach aches, or allergic reactions.  » « I can’t tell you if you will be in these who will benefit (in green), these who will have side effects (in brown) or, as the majority, those who will take them for nothing. » Legend No Antibiotics Antibiotics Cured with no antibiotics Cured due to antibiotics Not cured Definition of cured Rhinosinusitis: Better/cured 1 wk Bronchitis: No cough 2 wks AOM: No pain 2-3 days Pharyngitis: No pain 4-5 days On average, antibiotics reduce symptoms by a few hours to a day. RISKS Legend Antibiotics No Antibiotics No problems Problems Problems due to antibiotics • Definition of • problems • Health problems • Such as: • Diarrhea • Stomach ache • Skin rash 3

27. Improve decision quality 14% higher knowledge scores (14% 2011) 79% more accurate risk perception (74% 2011) 49% better match between values & choices (25% 2011) 6% Reduce decisional conflict (6% 2011) Help undecided to decide (41%) (43% 2011) Patients 34% less passive in decisions (39% 2011) Improved patient-practitioner communication (8/8 trials) Potential to reduce over-use -20% surgery (same 2011) -14% PSA (-15% 2011) -27% HRT (no new studies ) Compared to usual care, PtDAs… Findings similar for screening and treatment

28. 79% more accurate risk perceptions 2013-RR 1.79 [1.5, 2.1] – 17 trials 2011-RR 1.74 [1.5, 2.1] – 14 trials Sub-analysis Screening 1.87 [1.3, 2.7] – 6 trials; Treatment 1.74 [1.5, 2.1] – 11 trials Higher improvement when presented as numbers not words

29. 49% more Informed Values-based Choices 2013-RR 1.49 [1.14, 1.95] – 12 trials 2011-RR 1.25 [1.03, 1.52] – 8 trials Sub-analysis Screening 1.56 [ 1.2, 2.1] – 10 trials(used *MMIC) Treatment 1.07 [ 0.7, 1.6] – 2 trials (used other measures) *Marteau’s Multi-dimensional Measure of Informed Choice

30. Cost-effective [Hysterectomy] Kennedy et al. JAMA2002; 288: 2701-2708

31. What is decision coaching? • Develops patients’ skills in deliberating about options, preparing for a consultation, and implementing change. • Trained facilitators are supportive but non-directive • Delivery: face to face, groups, telephone, email, internet, automated (telephone, e-tools) (O’Connor et al., 2008; Stacey et al., 2008)

32. A guide for helping individuals making decisions

33. N=10 trials; Compared with usual care, coaching showed: • improved knowledge • similar increase to those exposed to decision aid alone • mixed results for other outcomes - costs, participation, satisfaction with process, values-choice agreement

34. Outline • Shared decision making (SDM) • Tools to facilitate SDM • Patient decision aids • Decision coaching • Implementation in practice

35. .USA: R. 3590 The Patient Protection and Affordable Care Act (March 2010) 35

37. Of 5 studies, using 3rd party observer measures… 2 had an impact (Legare et al. 2010, Cochrane review)

38. Interventions to increase SDM:a patient perspective Of 21 RCTs, 3 had positive effect: (Legare, Turcotte, Stacey, Ratte, Kryworuchko, Graham, 2012)

39. Results: Target and effect of interventions Fisher: p=0.038 There is a statistically significant link between the target and the effect of the intervention (Legare et al. Cochrane review Interventions for adoption of SDM; in review)

40. Identify the decision (and where in process of care?) • Find patient decision aids(s) to determine quality and relevance to setting • Assess factors likely to influence use (barriers, facilitators, champions) • Implement PtDA with training (multiple interventions, boosters) • Monitor use and outcomes 40

41. Summary Report for Surgeons Stacey, D. et al. BMJ 2008;0:bmj.39520.701748.94v2-bmj.39520.701748.94

42. http://decisionaid.ohri.ca