Updates on Psychosocial aspects of
Renal Transplantation
Dr Siobhan MacHale
Consultant Liaison Psychiatrist
Updates on Psychosocial Aspects of Renal Transplantation Nov 28th 2014
Physical & Mental Health –
different or the same?
• Chronic Kidney
Disease
• Depression
– Kidney
– Urea/Creatinine
– Lifestyle intervention
(+/- dialysis)
+/- Medication
– Brain
– Serotonin
– Lifestyle intervention
+/- Medication
Socially validated
Stigmatised
Disease
Socio-Cultural
Illness
Physiology
Psychological
Impact of Kidney disease on
Psychological Wellbeing
• Huge variety (individual and over time)
• Mild to severe, acute or chronic
Impact of Health problems and
Psychological factors on activity level
Previous Level of activity
Level of
Activity
Medical / Physical Problems
Psychological Problems
Time
Distress is “Normal”
• Continuum of Distress
• Mild
Moderate
(Normal, adaptive)
Severe
(Disabling)
Normal Reactions to an
Abnormal Situation
• Shock
• Anger and Irritability
• Denial
• Sadness
• Acceptance
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
Why is distress missed?
• ‘Understandability’ of emotional response
• Confusion re possible organic aetiology
• Unsuitability of clinical setting for discussion
• Stigma ‘Don’t ask, don’t tell’
AVOID
“medicalising”
distress
miss significant
psychological
problems
Psychological Components of Symptoms
• Determine whether or not a person seeks medical
advice
– Belief that it’s “not right”/ “something serious”
– Primary, secondary , tertiary gain
• Often remain hidden (covert) during the consultation
• Determine the outcome of physical illness
– Quality of life
– Duration of disability
– Mortality
Psychological Components of Symptoms
• Determine whether or not a person seeks medical
advice
– Belief that it’s “not right”/ “something serious”
– Primary, secondary , tertiary gain
• Often remain hidden (covert) during the consultation
• Determine the outcome of physical illness
– Quality of life
– Duration of disability
– Mortality
When Emotional Difficulties
become overwhelming…
• Affect quality of life
• Ability to manage treatment
• Fatigue, insomnia, low self-esteem,
inactivity, depression…
• Adjustment disorder commonest
Fatigue
Previous Level of
Functioning
Level of
Activity
Time
SYMPTOM LEVEL
MULTIDISCIPLINARY TEAM inc.
Transplant Coordinators, Medical,
Nursing, OT, Physio
Preparation/Transie
nt distress
INTERVENTION
Education/Training of
Patients/ Families by MDT/IKA
Mild - Moderate distress
Eg adjustment problems, difficulty coping,
mild-moderate depression/anxiety, family
work, ambivalence re renal transplant
Renal Counsellor
Social work
Selected potential living related
recipients
Severe distress
Eg depression, OCD, non-compliance, personality
assessment, psychological formulation
Clinical Psychology
All potential live donors
(Non-directed Altruistic donors)
Organic states/ suicidal/ psychosis
eg pharmacotherapy, complex delirium, complex capacity issues
Psychiatry
Selected potential live donors
(Non-directed Altruistic donors)
STEPPED CARE APPROACH
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
Relationship between mental disorder and
transplantation
•Pre-transplant Mental disorder may generate need for transplant
Directly eg via ingestion of toxic substances
Indirectly eg IDDM complicated by Eating Disorder
As a result of treatment eg long-term lithium use
Chronic illness may trigger mental disorder
Mental disorder (past or present) may be entirely coincidental
•Peri-transplant Organic mental disorder as a result of surgery and medical treatment
Delirium
Hallucinosis due to immunosuppressants
‘Steroid psychosis’, steroid-induced mood disorder
•Post-transplant Mental disorder secondary to surgery and its consequences
Adjustment disorder, post-traumatic stress disorder, Mood disorder
Relapse of mental disorder that led to need for transplant – BPAD, DSH
Behavioural problems threatening graft survival
Non-adherence, substance misuse
Source:
Owen JE et al. Psychosomatics, 47(3):213-22, 2006
Increased risk
if
• Personal/family hx of mental health problems
• Substance misuse
• Adverse social circumstances
• Unpleasant/demanding Rx
• Certain drug Rx eg immunosup/steroids
May exacerbate physical symptoms
Psychiatrist’s role in transplant
•
Widen the live donor pool eg
–
–
–
•
hx mental disorder
no mental disorder but relationship appears dysfunctional
altruistic
Select among potential recipients eg
–
–
Loss of previous transplant due to nonadherence
Bipolar affective disorder, substance misuse
ie discriminate against patients on basis of likely outcomes rather than entire groups
•
Improve transplant outcomes
–
Adjustment
adaptation to transplantation is a lengthy process
–
Adherence
ADHERENCE ISSUES
“The extent to which the patients’ actions do not accord with medical
recommendations”
Non-adherence to medication regimens after kidney transplantation is a major
risk factor for acute rejection and graft loss
•Rate of non-adherence to immunosuppressant medication highest among
kidney transplant recipients compared with recipients of other types of solid
organ transplant
•Up to 67% do not take immunosuppressive medications as prescribed
Case examples
• Cadaveric
• Non adherence
• Live Donor – donor
•
– recipient
• Cognitive impairment
• Substance misuse
Cadaveric recipient
• Adjustment difficulties +++
• Expectations vs reality
Case examples
65 yr old M
• Post transplant behavioural
disturbance
22 yr old M
• Post transplant abdominal
pain
• Delirium on underlying
cognitive impairment
• New onset IDDM
• Somatoform pain disorder
• Difficult social
circumstances ++
• Previous trauma++
• Non adherence with
immunsuppression/insulin
• Lack of social supports
Live donor assessment
Key areas
(1) experience of pressure / coercion to donate
(2) clear, realistic understanding of the transplant journey / operation
(capacity for informed consent)
(3) comprehensive assessment of emotional/mental state to ensure free
of distress or unhelpful motivations to donate
(4) ensure they have adaptive / healthy coping skills to withstand any
potential stressors
(5) assess and intervene with significant others when appropriate to
ensure supportive relationships in place
(6) Deal with any ambivalence about decision to donate
Major psychosocial contraindications for
live donation (Delmonico & Dew, 2007)
include:
•(a) ongoing psychiatric or substance use problems,
•(b) the presence of major financial stressors that could either have a
coercive effect on the donor’s decision to donate, or significantly
worsen as a result of donation and any medical complications,
•(c) evidence that the prospective donor has experienced undue
pressure or coercion from others to donate,
•(d) a limited understanding or capacity to understand the donor’s
own or the transplant candidate’s risks and benefits from kidney
donation, and
•(e) ambivalence about proceeding with the donation.
Indication for referral for psychiatric
opinion
Mental illness
Maladaptive coping strategies – substances, ED,
SH
Non-adherence
In case of LD, problematic family relationships
Hypothesis – a healthy human
transaction
Baseline
Post-op 4
months
Post-op 12
months
• Strong, respectful relationship between donor and
recipient
• Realistic expectations of outcome
• Gift is given without “strings attached”
• Gift is received without feeling obligated
• Donor experiences positive psychological health
• Eg “A spiritual experience”
Hypothesis – how it can go wrong
Unrealistic Fantasised Expectations: The Trap in Live Renal Donation
Baseline
Post-op 4
months
Post-op 12
months
• Troubled relationship between donor and recipient
• Unrealistic fantasised expectations of donor
• Metaphorically the recipient does not “clinch the deal”
• Donor devastated as expectations unmet
• Donor feels depressed eg “I feel like I’ve been used as
a spare part and discarded”
LD Followup (Dew et al 2007)
• 95% would donate again
• 72% +ve feelings about themselves
BUT
• 24% sig psychological distress
• 12% health is worse
• 25% worry about health/remaining kidney
• 23% financial distress
Preventive Intervention for Living Donor Psychosocial
Outcomes: Feasibility and Efficacy in a RCT
Dew et al American Journal of Transplantation 2013; 13: 2672–2684
Balance in live donation recipients : donors
‘Among the highest priorities in transplantation are the
protection of donors’ well-being and the prevention of
adverse consequences of donation’
Adverse medical consequences
&
Adverse psychosocial outcomes
Adverse psychosocial consequences
• Somatic complaints (fatigue/pain)
• Psychological distress (dep/anxiety)
• Strained family relationships
>50% all donors despite rigorous evaluation protocols
Selective preventive intervention – residual ambivalence
A consistent predictor of poor psychosocial outcomes
Motiviational Interviewing intervention effective
Residual ambivalence
‘Lingering feelings of hesitation and uncertainty that remain
after the prospective donor’s predonation evaluation and
the coexist with his/her intention to donate’ ~75%
Vs acute ambivalence - <3% of rule outs
Intervention - Motivational Interviewing
to enable PDs to resolve ambivalence
Phase 1 study – acceptability and relevance of intervention
Phase 11 study - RCT
LD Recipient Case examples
54 yr old F
• Anxiety Disorder++
inc needle phobia
22 yr old F
•Previous graft loss from non
adherence
•Brother potential donor – have
never discussed transplant
LIVE DONOR BPS SCREENING
Trans coordinators*
*Post out BiopPsychoSocial questionnaire BPSQ
Nephrologists
Screening
Absolute Contraindications:
*Active dependent substance misuse (drugs or alcohol)
*Dementia
*Active psychosis –back to referrer for local service intervention
Clear Evidence of coercion or financial benefit
(* back to referrer for local service intervention)
Relative contraindications:
Harmful use of drugs/alcohol
Limited understanding/capacity despite education
Ambivalence
Refer to
Psychology if
Relative contraindications as above
Significant BPSQ emotional distress
Significant anxiety/distress on contact with team members
Psychiatry if
Past history of psychosis
Past history of inpatient psychiatric care
Past history of suicidal ideation
Social Work if
Significant social issues arising from BPSQ
Significant financial issues arising from BPSQ
* Post out Psychological Wellbeing Index
Ambivalence Questionnaire
Live Donor Health & Lifestyle Questionnaire
RECIPIENTS BPS SCREENING
Nephrologists
Post out BPS questionnaire
Screening
Absolute CI:
*Active dependent substance misuse (drugs or alcohol)
*Dementia
*Active psychosis –back to referrer for local service intervention
Clear evidence of coercion or financial benefit
(* back to referrer for local service intervention)
Relative contraindications:
Harmful use of drugs/alcohol
Limited understanding/capacity despite education
Ambivalence
Poor adherence/compliance
Refer to stepped Care Model +
Social Work if
Screening questionnaire positive
Significant social/financial issues
Psychology if
Relative contraindications as above
Significant BPSQ emotional distress
Significant anxiety/distress on contact with team members
Psychiatry if
Past history of psychosis
Past history of inpatient psychiatric care
Past history of suicidal ideation
OTHER RENAL REFERRALS
• Most referrals come from the dialysis unit/ wards/ renal clinic for
issues other than transplant eg
• Diagnostic
– sorting out the interplay between medical problems (sepsis, anemia,
delirium, etc) and psych symptoms
– excluding depression in cases of dialysis refusal
– assessing capacity
• Treatment
– Management of acute behavioural disturbance
– Treatment of mood disorders
RECIPIENTS 2 yearly SCREENING
• MOCA
1.MOCA
2. Alcohol units/week
• ALCOHOL UNITS
WEBSITES
• www.beaumont.ie/renalunit
• www.beaumont.ie/marc
• www.ika.ie
www.nkf.co.uk
www.Ihatedialysis.com
www.nkf@kidneys.org
www.nipka.org
• www.getselfhelp.co.uk
www.helpguide.org.
Treatment Works!
• Information +++
• Social support
• Addressing worries
• Anxiety management
Discussion
Psychiatric Assessment
• Informed consent
– Recipient's illness
– Transplant surgery and process
• Relationship
• Decision-making process
–
–
–
–
–
How they were enlisted?
How was it made?
Motivation
Voluntariness - persuasion.manipulation.coercion
Ambivalence, Indebtedness, nature of "gift", expectations
• Psychiatric history/Coping style/Substance use
history/Social history/Supports, finances, insurance
• Reactions of others, views of family
• Ability to access follow-up - especially for overseas donors
• Right to reconsider and what would influence ability to do so
• Fill in the gaps in their knowledge inc Psychological outcomes
• Follow-up
The psychiatric exploration
• The relationship between donor and recipient
(the length of the relationship, its unique
course, any disjunctions, and inequalities real
or imagined)
• Donor’s motivation and expectations (realistic
or fantasised)
• Coercion (visible or masked)
The exploration of family dynamics
• What is the level of cohesiveness between the
“identified donor” and the potential recipient within
the family
• How do important others feel about the donation (e.g
the in-law in adult sibling donations)
• Is the donation a way for the potential donor to “shore
up” his or her status within the family – what are the
implications if this does not happen?
• How would the donor deal with rejection or the
ungrateful recipient?