Transcript Life beyond epilepsy: Epilepsy Ireland National Conference

7th Collaborative Conference 2014
The Challenges of SelfManagement of Long Term
Conditions
Henry Smithson
Department of General Practice UCC
Challenges of living
with a long term
condition
Stigma
Access to medical care
Living with the condition
shared decision making
medicines adherence
perverse incentives)
My job
My
future
My
life
My job
The
future
My
life
about patients
Each patient carries their own doctor inside
themselves. They come to us not knowing that truth.
We are at our best when we give the doctor that
resides within each patient a chance to go to work
– Albert Schweitzer MD: 'Your Inner Physician' a chapter in 'The
Intuitive Healer' by Marcia Emery and published in 1999 by
Thorsons in the UK
You can’t discuss something with someone
whose arguments are too narrow
Self management
Definitions
Diabetes Self-Management Education
Expert patient
Self-management
Person-ness or process driven
DSME
• ‘is the ongoing process of facilitating the
knowledge, skill, and ability necessary for
diabetes self care’
– Top down
– Paternalistic
– Necessary?
Expert patient
Lorig’s model based on RA
EPP aims to increase confidence, improve QoL,
manage their condition more effectively
Can improve elements of health status
Chronic Disease Self-management Program 2-year Health Status and
Hleath Care Utilization Outcomes Lorig KR, Ritter P, Stewart AL et
al Medical Care 38 (11) 1217-1223 2001
Self management
• Patients with chronic conditions make day-today decisions about—self-manage—their
illnesses.
• This reality introduces a new chronic disease
paradigm: the patient-professional
partnership, involving collaborative care and
self-management education
Self management
• Corbin and Strauss (1988) define the
necessary self-management knowledge and
skills as the work necessitated by chronic
illness.
• They describe three types of work:
– (I) the work to care for the disease, such as taking medications, visiting
physicians, exercising or maintaining a special diet;
– (2) the work to maintain one's normal life, including doing chores,
maintaining social contacts and hobbies; and
– (3) the emotional work required by an individual to deal with feelings
like loss of control, bereavement of self
Person centred care
Personhood ‘a standing or a status that is
bestowed by one human being on others in the
context of relationship and social being. It
implies recognition and trust’
Physical and mental health/well-being and QoL/systematic
impairment/
Personhood and dementia: revisiting Tom Kitwood’s ideas.
Dewing J: International Journal of Older People Nursing 3(1)
pp3-13 March 2008
Self efficacy refers to an individual’s
belief or feeling of confidence that
they can perform a desired action
Low self management scores are associated with
young age, those in education or employment,
those living with others and recent seizures
Illness behaviour
•
•
•
•
•
Identity
Cause
Timeline
Consequences
Control/curability
Leventhal H, Brissette I, Leventhal EA. The common-sense model of selfregulation of health and illness. In: Cameron LD, Leventhal H, eds. The
Self-Regulation of Health and Illness Behaviour. London: Routledge,
2003;42–65.
Shared Decision Making
Decisions made by the individual based on
information and guidance from doctors and
nurses and support from family and friends
using the self mx paradigm
• Not decisions shared between 1ry and 2ry care
• Not decisions shared between professionals
Shared decision making
•
•
•
•
lots of sources of information
lots of different advice
how we make sense of the situation
making sure the decisions we take are sensible
Taking the Tablets
• Medicines non-adherence
– What is it?
– Is it common?
– Will it upset your doctor?
– The balance of necessities and concerns
NON-ADHERENCE
Intentional
Unintentional
Poor recall
Dynamic and variable
behaviour
Difficulties in understanding
instructions
Influenced by the
patients beliefs and
concerns of medicines
Problems taking medicines
Inability to pay
The balance of
necessity or harm of
taking medicines
21/07/2015
Simply forgetting
© The University of Sheffield
As non-adherent behaviour is common and dynamic, it should not
be viewed as a ‘binary’ phenomenon: either adherent or non-adherent.
A checklist should be utilized at every clinical review to raise the issue of
how patients take their tablets.
Clinicians should ensure an accurate record of prescription ordering so
that the MPR can also be assessed.
Diabetes Care Practices
Health System
Organisation
Financial incentives
Financial rewards linked to
targets
Changes priorities of care
from clinical to process
Provider feedback
Reports to providers about
performance
Blinded feedback
Patient action plans
Individual goal setting and
care plans
Needs assessment and
regular clinical review
Patient education
Patient centred
Variety of format
Self management Support
Diabetes Care Practices
Delivery System Design
challenges
Defined care path
Explicit model or protocol
Experience with QOF
Risk stratification
RS algorithm tool to assess
risk level and level of
anticipatory care
Is the tool reliable
Outreach/follow up
Pro-active planned care
Resource challenge
In-reach
Customised patient
reminders of needed care
when ‘they present to
service’
Care co-ordination
Written processes and
structures
Individualising care
Cultural competence
Ensure care is in the
context of major racial,
ethnic, and cultural groups
Are we culturally aware
Team accountability
Care quality invested in a
team rather than an
individual
Team talk or team work
Diabetes Care Practices
Decision support
Guideline distribution and
training
Provider alerts
Clinical Information
Systems
Register
Electronic medical record
challenges
55% would not prefer to take AED than have
seizures
36% have strong concerns about long term AED
Thanks for your attention
Any questions?