Transcript Optimising Patient Adjustment and Self Care

Optimising patient adjustment and
self care strategies
Dr Siobhan MacHale
Consultant Liaison Psychiatrist
TUN conference Nov 27th 2015
Outline
1. Adjustment
Adaptive - maladaptive adjustment
2. Concordance
3. Interventions
4. Discussion
Normal Reactions to an
Abnormal Situation
• Shock
• Anger and Irritability
• Denial
• Sadness
• Acceptance
Disease
Socio-Cultural
Illness
Physiology
Psychological
Dialysis patient
Depression 20-30%
Anxiety 20-40%
Cognitive impairment
Percentage of Patients Reporting > 0
Problems by Category
94.34%
Distress Scores
10
60.38%
8
# of people
39.62%
6
24.53%
4
2
0
0
1
2
3
4
5
6
Score
7
8
9
Practical
Family
Emotional
Physical
Impact
•
•
•
•
•
•
•
•
Uncertainty regarding the future
Meaning of what has happened
Loss of control
Loss of independence
Helplessness
Fatigue
Fear
Death
Impact
Relationships – family
partner (sexuality, fertility)
children
friends
Body Image
disfigurement
scarring
Imagined
Self-esteem
sick role
disability
Leisure/Work
change
loss
financial
holidays
(Di)stress is “Normal”
• Continuum of Distress
Mild
-
Moderate
(Normal, adaptive)
-
Severe
(Maladaptive, disabling)
Beaumont Hospital
Renal Psychosocial Care Pathway (RPCP)
Chronic Kidney Disease
Stage 1-5
Dialysis
Transplantation
Ambulatory Care Nurses
Pts & Family
Medical Assessment Suitability for Transplantation
Ambulatory Care Nurse, Social Work Leaflet, Psychology as required.
Education & Support
·
·
·
Multidisciplinary Team
Education Day
Patient & Family
Pt. Care Coordinator +/Counsellor
Assessment Txp Options
Patient & Family
Dialysis Nurses
Pt. Care
CoordinatorEducation/
Support
Refer Counsellor if
Appropriate - NIS
Stepped Care
Deceased Donor
Transplant
Multidisciplinary Team
Paired
Transplant
Transplant Coord.
Donor Family
Support
Recipient/
Donor
Recipient
Donor
Recipient
MDT
MDT & Transplant
Coordinators
MDT
Intervention
Ongoing Support
Ongoing Support
Ongoing Support
Education/ Training of
Patients/Families
Stepped Care
as appropriate
Stepped Care
as appropriate
Stepped Care
as appropriate
Stepped Care
Symptom Level
Living Donor
Transplant
MDT
Referral Social
Work E112
Ongoing Support
Stepped Care
Transient
Distress
Mild-Moderate
Distress
Stepped Care
as appropriate
Medical Team/Surgical/
Ambulatory Care Nurses/
Pt Care Coord
Renal Counsellor/Social
Worker
Ambulatory Care
Nurses
2 Year Evaluation
Severe Distress
Clinical Psychology
Post Transplant Adjustment
Organic States/Suicidal/
Psychosis
Psychiatry
*If any queries contact Renal Counsellor Ext. 3931 Bleep 828
Social Worker Ext. 3195 Bleep 365
Nephrology
Follow-up
Beaumont or Primary Hospital
Stepped Care
As appropriate
Shock at diagnosis……
‘Following the diagnosis, and the crippling words of ‘you
have chronic kidney failure and need a transplant’ any
further meaningful discussion ended as questions took over
all thought’
Dr Duncan Thomas
Thomas, D. ‘The flip side of the coin – a doctor’s experience of renal failure’. Journal of Renal
Care, 2009: 35(1): 16-18
What are some of these
consequences?
• Loss of confidence in the reliability of the body
• Loss of trust in the failing organ
• Assumption of health replaced by hypervigilance
Sense of powerlessness
Powerlessness - Machines
‘no matter how uncomfortable or inconvenient dialysis is, if the
individual wants to live, then he or she is dependent upon a
machine’
Susan Stapleton
Powerlessness - Time
Waiting
Lack of
communication
Time waiting =
Time wasted
Unexplained
delays
Behaviour
‘survival depends on compliance with the health care system
demands’
Susan Stapleton
Dependence/independence
Trust and
Safety
Self-reliant
Need help
from others
prior to each dialysis session I have to be weighed. As I stand on the
scales,I am reminded by the sign that you must have your weight verified by
a member of staff
At one time I might have been responsible enough to raise a family, but
now I am not responsible enough to weigh myself’
Powerlessness
Behaviour
Passive
Aggressive
• Follow direction without
comment or question
• Anger
• Frustration
• Can’t make small
decisions when invited to
do so
• Aggression towards
others
• Fail to seek information
• Missing dialysis
sessions
• Fail to share information
• Silence/Verbal
Maladaptive Coping Strategies e.g.
Substance misuse
Eating disorders
Non concordence
Our Role
• Possible to identify negative reactions early
• Reduce adverse impact of negative reactions
• Reduce morbidity and mortality
‘Preventive psychological care is an investment
that underpins and secures medical and nursing
achievements’
Keith Nichols
CASE EXAMPLE
l 32 yr old female
l IDDM
l CRF
l Hx of dep/AN
l SPK
We know that adherence to medication is very
difficult to sustain
WHO report on non-adherence
•
Estimated that over 30 -50% medicines
prescribed for long term illnesses are not
taken as directed
Blum et al (2009) Systematic review
•
32-90.9% adherence at 12 months
•
Non-adherence is the norm
Concordance in the Transplant Setting
• Noncompliance (action in accordance with a request or
demand)
– implies rigidly following the instructions of the healthcare
provider – suggests noncompliance is the fault of the patient
•
Adherence (behave according to)
– suggests patients can make rational decisions to take or not take
their meds
• Concordance (agreement between persons)
– suggests an equal partnership between patient and healthcare
provider i.e. joint decision making
What do we know about nonconcordance?
 Not specific to disease type
 Not significantly related to
gender, intelligence,
education, occupation,
income or ethnicity
 Not consistent over time, or
for individuals
 Not easily fixed by
reminding people, informing
people, instructing people
or scaring people
“ Drugs don't work in patients who don't take
them “
( C. Everett Koop, M.D. US Surgeon General , 1981-9 )
Taking
medication
Absolute or
intermittent
Concordance
Clinic
attendance
Kiley et al 1993 105 renal transplant recipients followed x18 months min
Concordance determined by
cyclosporine whole blood levels > 30 ng/mL,
maintenance of ideal body weight (< 20% gain), and
percentage of missed clinic visits (< 20%).
Four groups identified:
(1) overall concordant (n = 25),
(2) nonconcordant with diet (n = 29, females more likely),
(3) nonconcordant with medication (n = 27, males more likely)
(4) overall nonconcordant (n = 29)
Diet/Fluid
balance
Concordance rates vary
• Between patients
• Within the same patient over time and across treatments
Thus it is much more accurate to view non-concordance as a behaviour
which most people engage in some of the time, rather than stable
characteristics of the “non-concordant patient”
Hotspots eg adolescence/transition
Most patients will be non-concordant
some of the time
Our patients
• Poor HCP-Patient Communication
• Low patient satisfaction +/- recall
• Cognitive difficulties
– Problems in planning/executive function or prospective
memory
• Financial or other barriers
Patients know what to do & how
BUT are reluctant because
• TREATMENT DOESN’T MAKE SENSE +/or
• WORRIES/CONCERNS ABOUT TREATMENT
Summary of evidence
What does non-concordance predict?
Perceived non-concordance with pre-transplant dialysis seen as a
predictor of post-transplant non-concordance
• But treatment regimens differ markedly
– Haemodialysis demands thrice-weekly attendance, strict fluid and dietary control
and multiple medications.
– Post-transplant requires strict adherence to medications, but fewer fluid / dietary
restrictions and few hospital attendances
While non-concordance with immunosuppressive medications is a
recognised cause of transplant failure, any association between
pre- and post-transplant non-compliance remains unclear
•
Non-concordance with medication regimens after kidney transplantation is a
major risk factor for acute rejection and graft loss
• Kidney transplant recipients highest rate compared with recipients of other
types of solid organ transplant
Measurement
• Direct eg monitoring
– observation of medication intake
– drug assay levels
Objective, may interfere with engagement
• Indirect measures eg
– patient interviews/ questionnaires
– collateral reporting,
– Dialysis fluid levels/wt change
– electronic pill counters/prescription refills,
– clinical outcomes
subjective and can be influenced
Multiple sources most reliable
OVERVIEW
Immunosuppressive medication
nonadherence (IMN)
• Highly prevalent in solid organ transplant
recipients
IMN
• Ave
22.6 cases /100 persons /yr
• Kidney
35.6
Most evidence
Contributes to 36% graft failure
• Heart
14.5
• Liver
6.7
Renal Transplant
Immunosuppressive medication non adherence IMNA




Acute rejection
Graft loss (x7)
Reduced renal function
Increased health care costs ($ 21 600 /3 yrs)
 Studies to date
 Heart/lung/liver pre tx MNA predicts 1st year IMNA
 Optimal timing for intervention unknown
 1-2 yrs follow up
RESULTS
• MNA highest pre transplant
• IMNA declines 0-6 mths post Tx
• IMNA increases 6-36 mths post Tx
• Pre Tx MNA predicts post Tx IMNA
over 3 yrs post Tx
Strategies to Improve Concordance
- EDUCATION
- Normalise non-adherence, use a non-judgemental and collaborative stance
- Accept that your patient does not want to let you down so might not tell you the truth
- Ask patients if they know why they need their medication (make sense of treatment)
- Ask patients if they have concerns about taking their meds over time (negative consqs)
- Use the consultation to anticipate and plan
Predict barriers, write down solutions
Create a bridge between consultations
If you provide a threat message, you have to support self-efficacy
Increased anxiety and guilt can lead to avoidance, rather than adherence
Online programs and information:
CDC
Adherence 360
NHS
Motivational interviewing
Relaxation and stress reduction training
LIVING WITH CHRONIC ILLNESS
l Education
l Better Health Better Living
Programme
l Beaumont.ie/marc
WEBSITES
• www.beaumont.ie/renalunit
• www.beaumont.ie/marc
• www.ika.ie
www.nkf.co.uk
www.Ihatedialysis.com
[email protected]
www.nipka.org
• www.getselfhelp.co.uk
www.helpguide.org.
CDSM PROGRAMME
l Internationally recognised
l Evidence based
l Efficacious psychosocial
educational intervention model for
various disease populations
l
improves HRQoL and reduces
health distress, with gains
maintained at follow-up
l Licensed, manualised programme
from Stanford University with 20
years of established research in
multiple disease conditions
BETTER HEALTH, BETTER LIVING
(CDSMP)
What is Better Health, Better Living?
Psycho-educational workshop for people with chronic conditions
 Participants meet for 2.5 hour sessions once a week for 6 weeks
 Led by 2 trained leaders , HCPs and peer leaders (patient volunteers) or just
peer leaders
 Designed to be taught in a community setting
What they learn
Techniques to deal with problems such as frustration, fatigue, pain and isolation

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
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Exercise Methods
Communicating effectively with family, friends and medical professionals
Nutrition
Relaxation
Appropriate use of medication
Decision making in medical care
How they learn it
Action plans (weekly goals)
Group discussion (brainstorming, problem solving)
Manualised , scripted educational ‘lecturettes’
Group process and modelling
CDSMP META ANALYSES FINDINGS
23 studies (1984 – 2009)
8,688 participants (2,902 in RCTs 5,779 in longitudinal studies)
Mindfulness & Relaxation Centre (MARC)
www.beaumont.ie/marc
On line CBT (that’s free)
• Moodgym
• E-couch
CASE EXAMPLE
l 32 yr old female
l CRF
l LD
l Children in care
l Post transplant issues
2 GROUPS
1. Those who can
develop insight and
work with
biopsychosocial
management
2. Those who cannot
(a minority)
Discussion