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Thought experiment Shared decision-making Andy Hutchinson Medicines Education Technical Adviser Stroke Major GI bleeds 2 Wide variation in preferences Alonso-Coello P, et al. (2014). Health Expectations doi: 10.1111/hex.12201 Multi-centre study in Spain 96 primary care outpatients aged at least 60 years who were at risk of developing (but who did not have) AF 96 physicians working in general medicine and cardiology who had cared for at least 1 person with AF in the preceding 6 months Median number of acceptable bleeds per 100: Physicians: 10, range 0 to 50 Patients: 10, range 0 to 100 In individual decision-making, physician and patient values and preferences will often be discordant Betty, aged 84 years Betty has AF Her CHA 2 DS 2 -VASc score is 7 (out of 9) Her HAS-BLED score is 3 (out of 9) The guideline says 3 4 1

Betty, aged 84 years Past medical history: MIs x2 Heart failure Hypertension Type 2 diabetes Presumed osteoporosis (#NOF, Colles#) Gout New presentation of AF Evidence into practice Maskrey N, 2014 Research National guidance Current medicines Simvastatin Digoxin Furosemide Allopurinol Alendronate Calcium & vitamin D Metformin Gliclazide Dapagliflozin Bisoprolol Ramipril Aspirin Lansoprazole RNLI Local implementation Care of Individual people 5 6 The NICE guideline on multimorbidity (1) Recommendations 1.1.2, 1.1.3 Management of risk factors for future disease can be a major treatment burden for people with multimorbidity and should be carefully considered when optimising care Evidence for recommendations in NICE guidance on single health conditions is regularly drawn from people without multimorbidity and taking fewer prescribed regular medicines The NICE guideline on multimorbidity (2) Recommendation 1.1.4 Think carefully about the risks and benefits, for people with multimorbidity, of individual treatments recommended in guidance for single health conditions Discuss this with the patient alongside their preferences for care and treatment 7 8 2

What is shared decision-making? Coulter A, Collins A, Kings Fund report 2011 Guidelines. Not tramlines. A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient s informed preferences provision of evidence-based information about options, outcomes and uncertainties decision support counselling a system for recording and implementing patients informed preferences 9 10 Two sources of expertise Coulter A, Collins A, Kings Fund report 2011 Clinician s expertise Diagnosis Disease aetiology Prognosis Treatment options Outcome probabilities Patient s expertise Experience of illness Social circumstances Attitude to risk Values Preferences Supporting shared decision-making (1) The first task of shared decision-making is to ensure that individuals are not making decisions in the face of avoidable ignorance Elwyn G, et al. (2012) J Gen Intern Med 27:1361 7 Using decision aids leads to people having a better knowledge of the options, feeling more informed and being clearer about what matters most to them having more accurate expectations of possible benefits and harms of their options participating more in decision-making being more likely to reach decisions in line with their values Stacey D, et al (2014) Cochrane Database of Systematic Reviews Issue 1. Art. No.: CD001431 11 12 3

Do patients want to be involved in decisions? Coulter A, Jenkinson C. Eur J Public Health 2005;15:355 60 26% say doctor should have primary decision role Patient expectation about involvement in decisions Doctor decides after consultation 16% Doctor sole decision maker 10% Patient sole decision maker 5% Patient decides after consultation 18% 23% say patient should have primary decision role Shared decision 51% 14 Supporting shared decision-making (2) Elwyn G, et al. (2012) J Gen Intern Med 27:1361 7 The second task is to support patients to deliberate about their options by exploring their reactions to information. When offered a role in decisions, some patients feel surprised, unsettled by the offer of options and uncertainty about what might be best. If all responsibility for decision making is transferred to patients they may feel abandoned. Some patients initially decline a role in decision making, and are wary about participating 15 16 4

Challenges Time! But does it seem to take longer because it s unfamiliar? Would time invested at the beginning of a process/pathway save time later? Can we re-design pathways to help? Patient perceptions HCP skills and assumptions How prepared are we to accept that the person may come to a different decision from us? What does Betty actually need, or indeed want? She says: I don t want any more tablets. I feel ill all the time. I am unsteady on my feet. I need help with shopping. I need help getting into the shower in the morning. At the moment I can t stand and cook; how am I going to get a meal? I certainly don t want anything like warfarin. My brother Joe was on warfarin and it was awful. I m 84 now - tell me which of my tablets are controlling my symptoms and let s stop the rest. You know what? I m happy to take my chances now 17 18 Thank you! Comments? Questions? Andy.Hutchinson@nice.org.uk 19 5