A PRACTICAL GUIDE TO SHARED DECISION MAKING: PUTTING RESEARCH INTO PRACTICE

Transcription

1 A PRACTICAL GUIDE TO SHARED DECISION MAKING: PUTTING RESEARCH INTO PRACTICE Chairs: Professor Deborah Fenlon Mrs Lesley Turner Presenters: Professor Diana Harcourt Dr Helena Lewis-Smith Dr Alex Clarke

2 The Benefits of Shared Decision Making Diana Harcourt Director, Centre for Appearance Research

3 Acknowledgements: The PEGASUS team at UWE, Bristol (Nicole Paraskeva, Paul White, Jane Powell) The PEGASUS trial steering committee Breast Cancer Now The participants & NHS staff involved in these studies

4 This presentation: What is (and isn t) shared decision making? What do research and policy tell us: o Does it help? o How can we help?

5 What is Shared Decision Making?

6 Shared decision making: clinicians and patients making decisions together using the best available evidence (Stigglebout et al, 2012) acknowledges the expertise of both the patient & the clinician

7 Source: Vivian, E. (2016). Shared decision-making in patients with type 2 diabetes, Consultant 360, 56(5):

8 Key characteristics: 1. at leas two participants are involved 2. both parties share information 3. both parties take steps to build a consensus about the preferred treatment 4. an agreement is reached on the treatment to implement. (Charles et al, 1997)

9 requires open exchange of info requires concordance between patient s desire for involvement & perceived actual involvement could be relevant at any point in the patient pathway (e.g. prevention (screening), primary care, acute care) can shift over time, or in an encounter

10 shifts the focus from what s the matter with you? to (The Health Foundation, 2014)

11 shifts the focus from what s the matter with you? to what matters to you? (The Health Foundation, 2014)

12 What isn t shared decision making?

13 overloading the patient with information just using Patient Decision Aids (but they may facilitate SDM) being rigid/prescriptive about how to implement it

14 Benefits of shared decision making: Improves patient reported outcomes & satisfaction with cancer care (Bergelt & Härter, 2010) particularly preference sensitive decisions it would be misleading to promote shared decision making as a panacea for the financial challenges facing the NHS (The Health Foundation, 2012, Helping People Share Decision Making)

15 Shared decision making can improve: people s: knowledge about their condition & treatment options involvement in their care satisfaction with care self-confidence in their own knowledge and self-care skills professionals communication with patients. The Health Foundation, 2012

16 SDM: Improved satisfaction with treatment amongst older BC patients BUT significantly greater impact on their lives (Mandelblatt et al, 2006, Journal of Clinical Oncology)

17 Fits NHS priorities & policy To improve patient experience To improve patient outcomes Cost savings fewer readmissions? better adherence?

18 Barriers to SDM time constraints patient anxiety patient lack of information and/or misinformation patient unwillingness or inability to participate (Charles et al, 2004)

19 Examined embedding shared decision making in practice (what are the barriers?) Examples of case studies of embedding SDM:

20 How can we help?

21 Embedding SDM in the NHS: Time to deliver it Time to become confident in doing it Change focus Shift in culture to see it as important Patients to expect to be routinely involved in decisions about their care. (NHS Right Care Shared Decision Making Programme) Learn to accept that patients might make a SDM that you don t agree with

22 NHS Shared Decision Making Programme Three questions: What are my options? What are the pros and cons for each option? What support is available to help me make a decision? (developed by AQuA for the National Shared Decision Programme, based on Shepherd et al.,2011)

23 Still, HOW? enhancing, rather than replacing, current practices (Dr Hilary Bekker, in Your Health Your Decision Evaluation Report, )

24 A continuum of strategies to support shared decision making Source: The Health Foundation, 2012

25 Three take home messages: Shared decision making involves recognising the expertise that both the patient and the health professional bring to the decision. It can offer benefits to patients, HPs and the NHS. It can be embedded within, and enhance, current practice.

26 What can help to make a good decision in a difficult situation like breast cancer? Alex Clarke Visiting Professor, Centre for Appearance Research

27 Aim for this session A practical guide to shared decision making: discuss some simple strategies that I have found helpful in clinical practice Informed by: relevant research feedback from participants in our current PEGASUS trial experience with people making preference sensitive decisions eg: in cosmetic settings

28 Biases and heuristics Thinking is not just a process of logical algorhythms Past experience used to develop heuristics (rules of thumb) eg: availability heuristic, confirmation bias etc Both patient and clinician will bring their own thinking biases into a consultation

29 Supporting complex decisions Need to provide good quality information which includes all options, including do nothing Need to understand patient s expectations of outcome and understanding of risk Need to recognise our own thinking biases

30 Information sharing In shared decision making, the emphasis is not just on information, but the process of how information is used

31 Values and beliefs Aim to help patients make a decision that is consistent with their core beliefs and values, based on relevant knowledge and is behaviourally implemented Decisional regret associated with having made a decision which is not consistent with core values (Marteau et al 2001: A measure of informed choice)

32 Listening: learning more about the individual We are the experts on your condition and options for treatment; but you are the expert on you. This session is an opportunity for us to learn a little more about you so that we can make sure you have all the relevant information to make a decision that is right for you

33 Listening skills Reflect back Summarise Open questions Allow silence: don t fill the gap Try to build a picture of the patients goals and expectations before discussing surgical options

34 What do patients expect? Physician centred outcomes: Physical change & symptom reduction Patient centred outcomes: Secondary or Lifestyle changes

35 Pelvic reconstruction 78 women asked to state goals for surgery Satisfaction related to goal achievement not objective cure (stress incontinence and stage 1&2 prolapse) Subjective outcomes predict satisfaction (Elkadry et al 2003, Kenton et al 2007, Am J Obs& Gynae)

36 PEGASUS Patients Expectations & Goals: Assisting Shared Understanding of Surgery

37 Feasibility study: 18 women contemplating BR, Royal Free Hospital, London Well received by patients and health professionals alike Harcourt, D., Griffiths, C., Baker, E., Hansen, E., White, P., & Clarke, A. (2016). The acceptability of PEGASUS: an intervention to facilitate shared decision-making with women contemplating breast reconstruction. Psychology, Health & Medicine, 21, 2:

38 Current study: A multi-centred study to evaluate the impact and cost of PEGASUS for women contemplating breast reconstruction, compared with usual care. End date: July 2019

39 Differentiating physical and psychosocial goals Physical goals: Size Shape Symmetry Sensation Scarring etc Psychosocial goals: Confidence Feel feminine Avoid prosthesis Play sport etc

40 I just want to be normal Looking normal: I just want to look like me looking normal to others looking like they did before cancer looking natural Behaving as normal: Fulfilling everyday activities Returning to normal health: emotional well-being removing evidence of the diagnosis Denford,et al. (2011). Understanding Normality: A qualitative analysis of breast cancer patients concepts of normality after mastectomy and reconstructive surgery, Psycho-Oncology 20:

41 Identifying unrealistic outcomes If you were more confident, what would be different? What could you do that you can t do now? (helps to identify vague goals or expectations that others will change rather than individual)

42 Frame options in terms of patient priorities The technique I would recommend for you is called a TRAM flap Having listened to what you have been saying about your lifestyle and priorities, the technique that I would recommend you think about is called a Tram flap (Behaviour change techniques include: goal setting and review, problem solving, action planning. (Michie et al Taxonomy of BCTs 2013)

43 Summary: What can help to make a good decision in a difficult situation? Learn as much as possible about the individual, including core values and beliefs Listen, allow silence, summarise and reflect back Differentiate physical and psychosocial goals: frame options in terms of patient goals

44 Remember Osler (William Osler ) The good physician treats the disease; the great physician treats the patient who has the disease

45 Take home messages 1. Decision making after diagnosis of breast cancer can be challenging for many patients. 2. Shared decision making involves recognising the expertise that both the patient and the health professional bring to the decision. 3. It can offer benefits to patients, HPs and the NHS. 4. It can be embedded within, and enhance, current practice. 5. Interventions are available to support patient decision making, but their impact is mixed. Further research is needed.

46 In the meantime: 6. Learn as much as possible about each patient, including their core values and beliefs. 7. Listen, allow silence, summarise and reflect back. 8. Differentiate physical and psychosocial goals: frame options in terms of patient goals. 9. Take time to practice the skills needed. 10. Consider how shared decision can best be embedded in your service.

47 APPEARANCE MATTERS: THE PODCAST (episode 20: Breast Cancer)

48 Thank you Source: Source: Changingfaces.org.uk Source: Bristol.ac.uk Source: bbc.co.uk Appearance Matters: The Podcast For CPM study details: