Why We Need Minimally Disruptive Medicine Frances Mair

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

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

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.

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

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

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

GAP at age 50 2 or more conditions Decile 10 prevalence (Most Deprived) 40 % Decile 1 prevalence (Most Affluent) 22 % How many years ahead? 10 -11 years 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

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

The Problem Ageing population; Multimorbidity Illness burden Slide courtesy of David Blane Polypharmacy; Multiple appointments Quality/safety concerns; Fragmentation Treatment burden Adverse outcomes

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.

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 “live with” a chronic illness Treatment burden = self-care practices that patients must perform to manage their treatments and their interactions with HPs 1 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

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

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

• 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.

DEFINING TREATMENT BURDEN

Learning about treatments and their consequences Adhering to treatments and lifestyle changes § Gaining an understanding of the illness, investigations, and treatments. Knowing when to seek help. 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 Gaining support, advice, reassurance relating to treatments § Using organisational skills for transport, prescriptions etc. § 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

“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. ” ID 08

• 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.

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…” ID 10 Close person 1 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

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

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.

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. ” (S 2 ID 17) • Acute admission experiences uniformly poor

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? ” ID 04

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

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.

C o n c e p Gallacher et al. Uncovering Treatment Burden as a t Key Concept for Stroke Care: A Systematic Review u Of Qualitative Research. PLOS Med 2013. a l m o d e l o f t r e a t

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

WHO IS AT RISK? ALL THOSE Wl. TH 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. . .

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.

EVERYONE NEEDS TO REDUCE THE BURDEN!

• BOTT (May). In press.

Intervention Type Provision of individual “transition coaches” to follow recently discharged patients home post hospital discharge, maintain continuity of care and ensure health needs are met, using home visits and phone calls. Palliative care nurses to support those with terminal illnesses and their families and/or friends by coordinating care, providing support and pointing them towards economic resources that will help them cope with their situation. The provision of paid interpreters for primary care consultations Longer appointments with a named primary care doctor made available for multimorbid patients and their families. Funding made available for support groups for those with chronic illness, to enable information sharing as well as psychological and practical support between members. Government funding directed towards vulnerable groups such as those on low income to support costs of travelling to hospital appointments. Burden Capacity X X X

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 Care 1 • Prioritise from the Patient Perspective TAKING INTO ACCOUNT CAPACITY ISSUES. . . http: //www. youtube. com/watch? v=Ff. Qk. JYet 89 s 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

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