Patients in the Driving Seat – Supporting Shared Decision-Making

1. Patients in the Driving Seat – Supporting Shared Decision-Making

2. Why We Need Minimally Disruptive Medicine Frances Mair Professor of Primary Care Research Institute of Health and Wellbeing University of Glasgow Frances.Mair@glasgow.ac.uk

3. Acknowledgements: • the Caring Together programme [www.mariecurie.org.uk/caringtogether], a partnership programme by Marie Curie Cancer Care, British Heart Foundation Scotland and NHS GGC • CSO Project CZG/3/22; CSO ‘Living Well with Multimorbidity’ programme (ARPG/07/1); and CAF/10/03

4. Acknowledgements Carl May and Victor Montori AND The International Minimally Disruptive Medicine Workgroup: Katie Gallacher, Sara Macdonald, Susan Browne, Bhautesh Jani, David Blane, Karolina Agur, Deborah Morrison, Kathryn Saunderson, David Eton, Nilay Shah, Nathan Shippee, Aaron Leppin, Patricia Erwin, Kathleen Yost.

5. Data Sources • Qualitative Studies with HF Patients (n=110); their carers (n=20 carers); and HPs (n=63). • Qualitative Studies with Stroke Patients (n=15) • Systematic Reviews of HF/Stroke literature • Systematic review of interventions to reduce 30 day readmission rates

6. Context • Concept of Treatment Burden • Interplay of treatment burden and capacity • Implications for Interventions and Health Service Delivery

9. Multiple Morbidity in Scotland Barnett, K., Mercer SW et al. (2012) Epidemiology of multimorbidity and implications for healthcare, research, and medical education: a cross-sectional study. Lancet, 380 (9836). pp. 37-43

10. GAP at age 50 Barnett, K., Mercer SW et al. (2012) Epidemiology of multimorbidity and implications for healthcare, research, and medical education: a cross-sectional study. Lancet, 380 (9836). pp. 37-43

11. Changing the Model of Care Healthcare providers have not yet found mechanisms to adapt to the chronic disease burden either by developing disease prevention programmes or disease management pathways suitable for chronic rather than acute disease. Professor Sir John Bell Regius Professor of Medicine, University of Oxford and President Academy of Medical Sciences 2008

12. The problem The Problem Illness burden Treatment burden Adverse outcomes Slide courtesy of David Blane

13. What is Treatment Burden? • Treatment burden is defined as the “work” people do to manage their condition, including reference to the services they use and how they negotiate and mobilize these.

14. Aim: To gain a better understanding of illness burden and treatment burden in heart failure Illness burden = the “work” that patients and their families do to understand and “live with” a chronic illness Treatment burden = self-care practices that patients must perform to manage their treatments and their interactions with HPs1 Slide courtesy of Deborah Morrison. (1) Gallacher K, May C, Montori VM, Mair FS: Understanding Treatment Burden in Chronic Heart Failure Patients. A Qualitative Study. Annals of Family Medicine 2011, 9: 235-243

15. Courtesy of BMJ 29 august 2009 Vol 339. May, Montori and Mair. We need Minimally Disruptive Medicine.

16. We Need Minimally Disruptive Medicine and Less SINC...... Good treatment adherence Optimum treatment outcomes Effective treatments Improved patient knowledge Decreased treatment burden Patient centred care delivered by health services Patient education and access to information Gallacher K, May CR, Montori V, Mair FS. Treatment Burden in Multimorbidity. In ABC of Multimorbidity. In Press

17. Treatment Burden Contributes to Non Adherence • Increases in complexity of treatment regimens has been associated with substantially lower adherence, further impairing effective treatment (WHO 2003). WHO (2003) Adherence to Long-Term Therapies. Evidence for Action. Geneva: WHO.

18. DEFINING TREATMENT BURDEN

19. Gaining support, advice, reassurance relating to treatments • Using organisational skills for transport, prescriptions etc. • Gaining an understanding of the illness, investigations, and treatments. • Knowing when to seek help. THE PATIENT Adhering to treatments and lifestyle changes Learning about treatments and their consequences   • Attending appointments and taking medications. • Enacting lifestyle changes • Overcoming barriers such as accessibility to healthcare and poor continuity of care. • Integrating treatments into social circumstances. Includes financial efforts. Engaging with others   Monitoring the treatments • Altering management routines. • Appraising treatments and medical advice. Gallacher K, May CR, Montori VM, Mair FS. Understanding patients' experiences of treatment burden in CHF using NPT. Annals of Family Medicine. 2011

20. “I think it seems to me not like cancer where they say you’ve got five months to live or you’ve got a year but nobody has said that. I wonder whether that is good strategy or what, I don’t know, but I really like answers but its because we have always been in control of our lives and now we are not so.” ID08

21. Incoherence • Retarded patients and caregivers’ ability to appraise symptoms and undertake help seeking behaviour • Distorted their understanding of tx and self care. • Volume and complexity of meds and treatments available to CHF pts are daunting. • New treatments, such as ICDs, posed particular challenges.

22. ICD Deactivation Problematic “And then he says the defibrillator, he didn’t say he was taking it out, he says he was going to switch off the resus button off… And again I said to him and why are you doing that? And he says ‘because its mainly, it can be very distressing because if X takes a heart attack and it doesn’t bring him round it would keep going off and you would get into an awful state’ and all that and I said ‘well I’m quite willing to take that chance’ I said, so just I prefer you to leave the defib as it is and then…” ID10 Close person1 Pettit SJ, Browne S, Hogg KJ, Connelly DT, Gardner RS, May CR, Macleod U, Mair FS. ICDs in end-stage heart failure. BMJ SUPPORTIVE AND PALLIATIVE CARE 2012

23. anticoag clinic dermatology clinic diabetic clinic partners/spouse optician hairdresser dentist family chiropody friends HFLN PATIENT landlord Marie Curie nurse neighbours HP Palliative care clinic cleaner SW/benefits staff district nurse alert team GP practice nurse social carers

24. Operationalising Treatments – Patient Tasks • Polypharmacy • Complex mechanisms were described for obtaining, organising, remembering and taking medications. • Enduring the side effects a related burden. • Enacting life style changes and self monitoring another important feature.

25. Operationalizing treatments: (ii) service configuration • Discontinuity and fragmentation the norm • led to patients having to mediate between Drs who disagreed about their diagnosis and treatment, and who employed different medication regimes. “You have got to explain all your illnesses, over and over again to a new doctor.” (S2 ID17) • Acute admission experiences uniformly poor

26. To sum up: “Aye I feel it’s for the institution, its not for the patient, everything is geared for smooth running, that means it’s from the hospital point of view and not the patients view, right or wrong, what do you think?” ID04

27. Method SRs of qualitative literature relating to patients’ experience of stroke and heart failure

28. Examples Similar To Our Original Qualitative Work Examples • “For example, the subject of ICDs and the option of deactivation was rarely addressed”(Dougherty M et al. 2007) • “Other respondents gave extensive accounts of the work they had to perform to be able to obtain house adaptations and other services.” (Willems et al, 2006) • “Those with severe CHF struggle against an invincible need to drink, failing to keep to the restriction on drinking water and cannot find anything that helps to slake their thirst, for more than a short time” (Brannstrom M et al. 2006) -“It seems like a heart doctor will look at your heart [but] if you have any other problems,” the doctor will just tell you to “go to that clinic, go to this clinic, go to that clinic.” (Rodgriguez K L et al. 2008) • Jani B Blane D, Browne S, May CR, Montori V, Shippee N, Mair FS. Identifying Treatment Burden as an Important Concept for End of Life Care in those with Advanced Heart Failure Current Opinion in Supportive and Palliative Care. 2013.

29. Conceptual model of treatment burden Gallacher et al. Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review Of Qualitative Research. PLOS Med 2013.

30. Capacity Treatment Burden Capacity Treatment Burden Medications Medications Good social support Fragmented healthcare provision Fragmented healthcare provision Resilience Resilience Information seeking Information seeking Coping Threshold Gallacher K, May CR, Montori V, Mair FS. Treatment Burden in Multimorbidity. In ABC of Multimorbidity. In Press

31. WHO IS AT RISK? ALL THOSE WlTH CAPACITY ISSUES • Those with LTCs especially Multimorbid • Vulnerable: migrants, those with learning difficulties, Those with health literacy issues, socially isolated, mental health problems, addiction problems, those lacking good social support networks and so on..............

32. EMERGING EVIDENCE OF THE VALUE OF INTERVENTIONS TO ADDRESS THESE ISSUES.......1 1. Leppin A, Gionfriddo MR, Kessler M, Brito JB, Mair FS, Gallacher K, Wang Z, Erwin PJ, Sylvester T, Boehmer K, Ting HH, Murad H, Shippee ND, Montori VM. Preventing 30-Day Hospital Readmissions A Systematic Review and Meta-Analysis of Randomized Trials. JAMA Internal Medicine. Published Online May 12, 2014.

33. EVERYONE NEEDS TO REDUCE THE BURDEN!

34. BOTT (May). In press.

36. KEY PRINCIPLES OF MDM – MAKE IT EASY! • Reduce Burden of Treatment • Encourage Coordination and Improve Communication • Acknowledge Comorbidity in Clinical Evidence • TB Is A Barometer of Quality of Care1 • Prioritise from the Patient Perspective TAKING INTO ACCOUNT CAPACITY ISSUES............. http://www.youtube.com/watch?v=FfQkJYet89s 1. Jani B Blane D, Browne S, May CR, Montori V, Mair FS. Identifying Treatment Burden as an Important Concept for End of Life Care in those with Advanced Heart Failure Current Opinion in Supportive and Palliative Care. 2013

37. Implications for Practice THE FOLLY OF UNINTEGRATED CARE! Integrated Care....

38. Facing a Treatment Choice in Cancer - A Patient’s Perspective Professor Alan McNeill Edinburgh

39. My Story • 29th April 2012 swollen gland right side of my neck • 26th May seen by ENT surgeon colleague & was informed that I had a squamous carcinoma of hypopharynx!!

40. My Story • 5th June - oncologist and ENT surgeon - plan for chemo-radiation – asked about TOLM • 11thJune met Prof Andreas Dietz in Leipzig • 18th June radical neck dissections & TOLM in Leipzig • 1st July returned to Edinburgh

41. My Story • 30th July commenced IMRT to right side of neck, completed 7th September • 1st October phased return to work – personal goal achieved • 2 x bulking injections to right vocal fold in February & May 2013 • So far so good!

44. Risk Naturalist Intellect Doubter Maximalist Minimalist disappointment regret Technophile Framing Availability bias Believer Benefit

45. Main aim in helping patient make a treatment decision - AVOID REGRET

46. Audio Recording Consultations in Prostate Cancer Professor Alan McNeill Edinburgh

47. Audio Recording Consultations

48. Hurdles to Overcome • Source appropriate recording equipment for direct to CD recording • Helped by Edinburgh & Lothian Prostate Cancer Support Group • Concern about data storage – only patient has a copy of the CD • Consent and Information Sheet • Approval of Caldicott Guardian and Medical Director

49. Audit of Patient SatisfactionGood DW, Laird A, Delaney H, Stewart GD, Hacking B, McNeill SA • Ethical Committee approval • Postal survey 1 year post-treatment decision • Validated questionnaires, of 58 patients who had CD recording of their consultation and 45 controls who had not. • Functional outcomes (IPSS, continence) • EORTC QLQ- C30/PR25 • Decision conflict scale • Patient satisfaction • Return rates of 67 and 60% respectively

50. Results • Patient groups well matched for disease status, treatment type (surgery/radiotherapy/surveillance) and duration of follow-up (11.5 and 13 months) • No significant differences in functional outcomes between the two groups at 1 year.