South Yorkshire GPSTP June 2013

1. Academic Unit of Primary Medical Care Self Management, Multimorbidity, Shared Decision Making and Care Planning with People who have Long Term Conditions Nigel Mathers Professor of Primary Medical Care, University of Sheffield Vice Chair, Royal College of General Practitioners South Yorkshire GPSTP June 2013

2. Long Term Conditions and Personalisation of Care Background ”the ageing population and the increased prevalence of chronic diseases require a strong reorientation away from the current emphasis on acute and episodic care towards prevention, self care, and care that is well-coordinated and integrated.” The King’s Fund, 2011

3. Shared Decision Making, Care Planning and the use of Patient Decision Aids • 1. Long Term Conditions: • 15.4m people in England have one or more long term conditions (LTCs) • Utilisation of health services is high amongst the LTC group – they account for 30% of the population, but 70% of NHS spending (c. £70bn) • The number of people with multiple conditions is projected to increase and this will put pressure on NHS budgets • LTCs are strongly linked to health and economic inequalities • While the majority of people with LTCs are elderly by no means all 3

4. The person who lives with an LTC: Day to day management is self management

5. Our grossly underutilized workforce: [people who live with LTCs]

6. 2. Self management; many tasks, many challenges

7. The domains of self management: My condition (Biological) Me The way I feel (Psychological) What I do (Social / Behavioural)

8. 3. Patient Activation= knowledge, skills and confidence to manage one’s own health and healthcare Knowledge (Biological) Me Confidence (Psychological) Skills (Social / Behavioural)

9. Strategies to support people on their ‘journey of activation’

10. Public services face unprecedented challenges The commonest long term condition is: Multiple long term conditions

11. Shared Decision Making, Care Planning and the use of Patient Decision Aids • 4. Multimorbidity and Long Term Conditions: • The Picture in Scotland • Clinical data from 310 Scottish general practices for 1,754,133 registered patients was provided by the Primary Care Clinical Informatics Unit (“PCCIU data”) • Clinical data from 40 Scottish general practices linked to hospital admissions data (“ISD and PCCIU data”) • Stewart Mercer, Professor of Primary Care Research, University of Glasgow: SSPC National Lead for Multimorbidity Research stewart.mercer@glasgow.ac.uk • Bruce Guthrie, Professor of Primary Care Medicine, University of Dundee: Living Well with Multimorbidity Epidemiology work-stream lead b.guthrie@dundee.ac.uk • Sally Wyke, Professor of Interdisciplinary Research, University of Glasgow: sally.wyke@glasgow.ac.uk 11

12. Shared Decision Making, Care Planning and the use of Patient Decision Aids • Multimorbidity and Long Term Conditions 12

13. Shared Decision Making, Care Planning and the use of Patient Decision Aids How they relate

14. Shared Decision Making, Care Planning and the use of Patient Decision Aids • Multimorbidity and Hospital Admissions 14

15. Shared Decision Making, Care Planning and the use of Patient Decision Aids 5. Shared Decision Making Shared decision Making is ‘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. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a system for recording and implementing patients’ informed preferences.’ Coulter A and Collins A. 2011. Making shared decision-making a reality: no decision about me, without me [pdf] London. The Kings Fund. Available at http://www.kingsfund.org.uk/publications/nhs_decisionmaking.html [Accessed 25 April 2012] 15

17. Shared Decision Making, Care Planning and the use of Patient Decision Aids Shared Decision Making NHS patient Surveys (2002-9) 46-49% patients want more involvement in treatment decisions 2010 1 in 3 patients in Primary Care 1 in 2 patients in Hospital 17

18. Shared Decision Making, Care Planning and the use of Patient Decision Aids • Benefits of Shared Decision Making • Better Consultations • Clearer Risk Communication • Improved Health Literacy • More Appropriate Decisions • Fewer Unwanted Treatments • Healthier Lifestyles • Improved Confidence and Self-efficacy • Safer Care • Reduced Costs • Better Health Outcomes 18

19. Shared Decision Making, Care Planning and the use of Patient Decision Aids 19

20. Shared Decision Making, Care Planning and the use of Patient Decision Aids • 6. What are Patient Decision Aids (PDAs)? • Evidence base for treatment options • Clarification of people’s values • Systematic guidance to inform decisions 20

21. Shared Decision Making, Care Planning and the use of Patient Decision Aids 21

22. Shared Decision Making, Care Planning and the use of Patient Decision Aids • The PANDAs decision aid: • For doctors and nurses in General Practice • For people with Type 2 diabetes (T2DM) who are making treatment choices • Purpose of the study: • To determine the clinical effectiveness of the PANDAs decision aid. • Primary Research Question: • “Does the use of the PANDAs decision aid improve decision quality in patients with T2DM who are making decisions whether or not to start insulin in General Practice?” 22

23. Shared Decision Making, Care Planning and the use of Patient Decision Aids • METHODS [1] • Design: A cluster randomised controlled trial • Intervention: • Brief training of clinicians • Pre-consultation familiarisation with the PDA • Use of PDA by patients and clinicians in the consultation • Control: • Usual care (no PDA) • Participants: • 175 people with T2DM from 49 General Practices randomised into intervention (n=25) and control (n=24) groups. 23

24. Shared Decision Making, Care Planning and the use of Patient Decision Aids • METHODS [2] • Inclusion criteria: • Practices: • >4 partners • List size >7,000 • T2DM > 1% of Practice population • Patients: • People with T2DM (age >21) taking at least 2 oral glucose-lowering drugs at maximum tolerated dose • Most recent HbA1c >7.4% (>57 mmols/mol) or • Advised in preceding 6 months to add or consider changing to insulin 24

25. Shared Decision Making, Care Planning and the use of Patient Decision Aids • METHODS [3] • Outcome measures and follow-up: • Primary outcome measure: • Decisional conflict based on the Decisional Conflict Scale score (indicator of decision quality) • Secondary outcome measures • Knowledge: which treatment option most effective in reducing blood glucose and diabetic complications? • Realistic expectations: self-report of chances of experiencing hypoglycaemia, gaining weight and developing complications • Preference option: preferred treatment of initiating insulin, adhering more to diabetes advice, or making no change • Participation in decision making (Control Preference Scale) • Regret: for decision made (Regret Scale) 25

26. Shared Decision Making, Care Planning and the use of Patient Decision Aids 26

27. Shared Decision Making, Care Planning and the use of Patient Decision Aids Study practice profile (mean and range) *Index of Multiple Deprivation 27

28. Shared Decision Making, Care Planning and the use of Patient Decision Aids Preferred choices of patients in intervention and control groups post-consultation (X23=2.88, p =0.410 ) 28

29. Shared Decision Making, Care Planning and the use of Patient Decision Aids The effect of the PANDAs decision aid on HbA1c at 6 months * adjusted for age, education, gender, baseline HbA1c, insulin status and clustering. P=0.117 29

30. Shared Decision Making, Care Planning and the use of Patient Decision Aids Decision making roles of patients in the intervention and control groups, post consultation with their doctor/nurse (X2=8.9, df=2, p=0.012) 30

31. Shared Decision Making, Care Planning and the use of Patient Decision Aids • CONCLUSIONS • In people with diabetes who are making treatment choices in General Practice, use of the PANDAs decision aid: • Reduces decisional conflict • Improves knowledge • Promotes realistic expectations • Promotes autonomy • without prolonging consultation time 31

32. Shared Decision Making, Care Planning and the use of Patient Decision Aids 32

33. Long Term Conditions and Personalisation of Care The Richmond Group of Charities Principles: 1. Co-ordinated care Desired outcomes: people feel that the care they receive is seamless because it is organised around them and their needs.

34. Long Term Conditions and Personalisation of Care The Richmond Group of Charities Principles: 2. Patients engaged in decisions about their care Desired outcomes: all patients and carers can take anactive role in decisions about their care and treatmentbecause they are given the right opportunities, information and support.

35. Long Term Conditions and Personalisation of Care The Richmond Group of Charities Principles: 3. Supported self-management Desired outcomes: people with long term conditions can manage their condition appropriately because they have the right opportunities, resources and support.

36. Shared Decision Making, Care Planning and the use of Patient Decision Aids • 7. What is Care Planning? • Prepared pro-active Practice team • Informed engagement by people in their own care • Partnership working between Doctors/Nurses [HCPs] and people with Long Term Conditions [LTCs] 36

37. Shared Decision Making, Care Planning and the use of Patient Decision Aids ‘The House’ IT: Clinical record of care planning & able to feed data into commissioning Consultation skills/attitude ‘Prepared’ for consultation Integrated, multi-disciplinary team & expertise Information/ structured education Senior buy-in & local champions to support & role model Emotional & psychological support Identify and fulfill needs Procured time for consultations, training and IT Quality assure and measure 37

38. Shared Decision Making, Care Planning and the use of Patient Decision Aids Care Planning: the Sheffield experience (Stephenson, 2013) 38

40. Care fragmentation

41. Shared Decision Making, Care Planning and the use of Patient Decision Aids RCGP Care Planning Programme: The Vision: A joint strategic approach to health improvement based on the concerted implementation of care planning in general practice, within the context of multimorbidity, and in partnership with a range of disease specific organisations; covering, for example, cardiovascular conditions, respiratory and musculo-skeletal conditions and cancer. R3

42. Long Term Conditions and Personalisation of Care • The RCGP Care Planning Programme • Aims: • To embed care planning into the ‘core business’ of General Practice • To incorporate the development of care planning skills into the GP training curriculum and facilitate other educational initiatives for established GPs.

43. Long Term Conditions and Personalisation of Care • The RCGP Care Planning Programme: • Objectives: • Communities of Practice ‘Natural Laboratories’ Leadership facilitation Active Championing (“diffusion of innovation”) Primary Healthcare Team involvement Service redesign/delivery models • Learning and training resources (GP curriculum) • Improvement research (evaluation) • Development of IT/Metrics • Communication strategy

44. Shared Decision Making, Care Planning and the use of Patient Decision Aids 8. Practice Variation 44

45. Understanding variation: the bad and the good. Mulley, 2011 Shared Decision Making, Care Planning and the use of Patient Decision Aids • Bad Variation (care not evidence-based) • Poor research  professional uncertainty • Poor knowledge  professional ignorance • Good Variation (care is patient-centered) • Clinical differences among patients • Personal differences among patients If all variation were bad, it would be easy to stop it. What is difficult is reducing the bad variation while keeping the good. JAMA, 1988 10

46. Practice variation: when there is little or no evidence Shared Decision Making, Care Planning and the use of Patient Decision Aids • When to order a diagnostic test…? • How often to see a patient with chronic disease…? • When to admit a patient to a hospital…? • When to admit a patient to intensive care…? • How long a patient should stay in the hospital…? 11

47. Variation: decreasing the bad and increasing the goodMulley, 2011 Shared Decision Making, Care Planning and the use of Patient Decision Aids • Decreasing bad variation (making care evidence-based) • Improve knowledge management • Improve communication • No avoidable ignorance • Increasing good variation (making care patient-centered) • Recognize clinical differences among patients • Honor personal differences among patients The only efficient way to reduce overuse, underuse, and misuse of care 12

48. Shared Decision Making, Care Planning and the use of Patient Decision Aids Patient ‘Empowerment’[Personalisation of Care] Long Term Conditions and Multimorbidity Shared Decision Making (Patient Activation) Use of Patient Decision Aids Care Planning Practice Variation 48

49. Long Term Conditions and Personalisation of Care It’s time for change!Thank You

50. Shared Decision Making, Care Planning and the use of Patient Decision Aids Questions? 50