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Why We Need Minimally
Disruptive Medicine
Frances Mair
Professor of Primary Care Research
Institute of Health and Wellbeing
University of Glasgow
[email protected]
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
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
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
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


Gaining an
understanding of the
illness, investigations,
and treatments.
Knowing when to seek
help.
Adhering to treatments
and lifestyle changes
 
THE
PATIENT

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.”
ID08
• 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…” 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
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.” (S2 ID17)
• 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?” ID04
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.
Gallacher et al. Uncovering Treatment Burden as a
Key Concept for Stroke Care: A Systematic Review
Of Qualitative Research. PLOS Med 2013.
Capacity
Treatment
Burden
Capacity
Treatment
Burden
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 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..............
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.
Interventions to maximize
capacity of the individual and
the wider network
Interventions to reduce
treatment burden
Individual and their wider
social network (both formal
and informal)
Improved Adherence and
Improved Outcomes
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
X
X
X
X
X
X
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 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
Implications for Practice
THE FOLLY OF UNINTEGRATED CARE!
Integrated
....
Care