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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
Illness
Disease Socio-Cultural
Psychological
Physiology
Dialysis patient
Practical Family Emotional Physical
39.62%
24.53%
60.38%
94.34%
Percentage of Patients Reporting > 0 Problems by Category
0 1 2 3 4 5 6 7 8 90
2
4
6
8
10
Distress Scores
Score
# o
f p
eop
le
Depression 20-30%Anxiety 20-40%Cognitive impairment
Impact
• Uncertainty regarding the future • Meaning of what has happened• Loss of control• Loss of independence• Helplessness• Fatigue• Fear• Death
Impact
Relationships – familypartner (sexuality, fertility)childrenfriends
Body Image Self-esteem Leisure/Workdisfigurement sick role changescarring disability lossImagined financial
holidays
(Di)stress is “Normal”
• Continuum of Distress
Mild - Moderate - Severe(Normal, adaptive) (Maladaptive,
disabling)
Chronic Kidney DiseaseStage 1-5
Ambulatory Care Nurses
Education & Support
Pt. Care Coordinator +/- Counsellor
Assessment Txp OptionsPatient & Family
Stepped Care
Dialysis
Intervention
Education/ Training of Patients/Families
Renal Counsellor/Social Worker
Clinical Psychology
Psychiatry
Multidisciplinary TeamSymptom Level
Transient Distress
Mild-Moderate Distress
Severe Distress
Organic States/Suicidal/Psychosis
Transplantation
Deceased Donor Transplant
MDT
Ongoing Support
Stepped Care as appropriate
Post Transplant Adjustment
Stepped CareAs appropriate
Medical Team/Surgical/Ambulatory Care Nurses/
Pt Care Coord
Beaumont Hospital Renal Psychosocial Care Pathway (RPCP)
Pts & Family
· Dialysis Nurses· Pt. Care
CoordinatorEducation/Support
· Refer Counsellor if Appropriate - NIS
Stepped Care
Multidisciplinary Team Education Day
Patient & Family
*If any queries contact Renal Counsellor Ext. 3931 Bleep 828Social Worker Ext. 3195 Bleep 365
Medical Assessment Suitability for TransplantationAmbulatory Care Nurse, Social Work Leaflet, Psychology as required.
Living Donor Transplant
Donor Recipient
Paired Transplant
Ambulatory Care Nurses
2 Year Evaluation
Stepped Care
Recipient
Transplant Coord. Donor Family
Support
MDT & Transplant Coordinators
Ongoing Support
Stepped Care as appropriate
MDT
Ongoing Support
Stepped Care as appropriate
Recipient/Donor
MDTReferral Social
Work E112
Ongoing Support
Stepped Care as appropriate
Nephrology Follow-up
Beaumont or Primary Hospital
Shock at diagnosis……
‘Following the diagnosis, and the crippling words of ‘youhave chronic kidney failure and need a transplant’ anyfurther meaningful discussion ended as questions took overall thought’ Dr Duncan Thomas
Thomas, D. ‘The flip side of the coin – a doctor’s experience of renal failure’. Journal of RenalCare, 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
WaitingLack of
communicationUnexplained
delays
Time waiting = Time wasted Behaviour
‘survival depends on compliance with the health care system demands’ Susan Stapleton
Dependence/independence
Trust and Safety
Need help from othersSelf-reliant
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• Follow direction without
comment or question
• Can’t make small decisions when invited to do so
• Fail to seek information
• Fail to share information
Aggressive• Anger
• Frustration
• Aggression towards others
• Missing dialysis sessions
• 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
l 32 yr old female
l IDDMl CRFl Hx of dep/AN
l SPK
CASE EXAMPLE
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 non-concordance?
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 )
Concordance
Taking medication
Diet/Fluid balance
Clinic attendance
Absolute or intermittent
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)
Most patients will be non-concordantsome of the time
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
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
IMN
• Highly prevalent in solid organ transplant recipients
• Ave 22.6 cases /100 persons /yr
• Kidney 35.6 Most evidence Contributes to 36% graft failure
• Heart 14.5
• Liver 6.7
Immunosuppressive medication nonadherence (IMN)
Immunosuppressive medication non adherence IMNAAcute rejectionGraft loss (x7)Reduced renal functionIncreased health care costs ($ 21 600 /3 yrs)
Studies to dateHeart/lung/liver pre tx MNA predicts 1st year IMNAOptimal timing for intervention unknown1-2 yrs follow up
Renal Transplant
• 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
RESULTS
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-efficacyIncreased anxiety and guilt can lead to avoidance, rather than adherence
Online programs and information:CDCAdherence 360NHS
Motivational interviewingRelaxation 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
www.nipka.org
• www.getselfhelp.co.uk www.helpguide.org.
l Internationally recognised
l Evidence based
l Efficacious psychosocial educational intervention model for various disease populationsl 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
CDSM PROGRAMME
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 learnTechniques to deal with problems such as frustration, fatigue, pain and isolation
Exercise Methods Communicating effectively with family, friends and medical professionals Nutrition Relaxation Appropriate use of medication Decision making in medical care
How they learn itAction plans (weekly goals)
Group discussion (brainstorming, problem solving)
Manualised , scripted educational ‘lecturettes’
Group process and modelling
CDSMP META ANALYSES FINDINGS23 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
l 32 yr old female
l CRFl LDl Children in care
l Post transplant issues
CASE EXAMPLE
1. Those who can develop insight and work with biopsychosocial management
2. Those who cannot (a minority)
2 GROUPS
Discussion
