Updates on Psychosocial aspects of Renal Transplantation Dr Siobhan MacHale Consultant Liaison...
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Transcript of Updates on Psychosocial aspects of Renal Transplantation Dr Siobhan MacHale Consultant Liaison...
Updates on Psychosocial aspects of Renal Transplantation
Dr Siobhan MacHale
Consultant Liaison Psychiatrist
Updates on Psychosocial Aspects of Renal Transplantation Nov 28 th 2014
Physical & Mental Health – different or the same?
• Chronic Kidney Disease
– Kidney– Urea/Creatinine– Lifestyle intervention
(+/- dialysis)
+/- Medication
Socially validated
• Depression
– Brain– Serotonin– Lifestyle intervention
+/- Medication
Stigmatised
Illness
Disease Socio-Cultural
PsychologicalPhysiology
Impact of Kidney disease on Psychological Wellbeing
• Huge variety (individual and over time)
• Mild to severe, acute or chronic
Previous Level of activity
Level of Activity
Time
Impact of Health problems and Psychological factors on activity level
Medical / Physical Problems
Psychological Problems
Distress is “Normal”
• Continuum of Distress
• Mild Moderate Severe(Normal, adaptive)
(Disabling)
Normal Reactions to an Abnormal Situation
• Shock
• Anger and Irritability
• Denial
• Sadness
• Acceptance
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
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
miss significant
“medicalising” psychological
distress 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 INTERVENTION MULTIDISCIPLINARY TEAM inc. Transplant Coordinators, Medical, Nursing, OT, Physio
Mild - Moderate distressEg adjustment problems, difficulty coping, mild-moderate depression/anxiety, family work, ambivalence re renal transplant
Preparation/Transient distress
Severe distressEg depression, OCD, non-compliance, personality assessment, psychological formulation
Organic states/ suicidal/ psychosiseg pharmacotherapy, complex delirium, complex capacity issues
Education/Training of Patients/ Families by MDT/IKA
Renal Counsellor Social work Selected potential living related recipients
Clinical PsychologyAll potential live donors (Non-directed Altruistic donors)
Psychiatry Selected potential live donors (Non-directed Altruistic donors)
STEPPED CARE APPROACH
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
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
• Live Donor – donor• – recipient
• Non adherence
• Cognitive impairment
• Substance misuse
Cadaveric recipient
• Adjustment difficulties +++
• Expectations vs reality
Case examples
65 yr old M• Post transplant behavioural
disturbance
• Delirium on underlying cognitive impairment
• New onset IDDM
• Difficult social circumstances ++
• Non adherence with immunsuppression/insulin
22 yr old M• Post transplant abdominal
pain
• Somatoform pain disorder
• Lack of social supports
• Previous trauma++
Live donor assessmentKey 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 •Strong, respectful relationship between donor and recipient•Realistic expectations of outcome
Post-op 4 months •Gift is given without “strings attached”•Gift is received without feeling obligated
Post-op 12 months •Donor experiences positive psychological health•Eg “A spiritual experience”
Hypothesis – how it can go wrongUnrealistic Fantasised Expectations: The Trap in Live Renal Donation
Baseline •Troubled relationship between donor and recipient•Unrealistic fantasised expectations of donor
Post-op 4 months •Metaphorically the recipient does not “clinch the deal”•Donor devastated as expectations unmet
Post-op 12 months •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 ambivalenceA 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 Interviewingto enable PDs to resolve ambivalence
Phase 1 study – acceptability and relevance of interventionPhase 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 SCREENINGTrans coordinators**Post out BiopPsychoSocial questionnaire BPSQ
NephrologistsScreening Absolute Contraindications:*Active dependent substance misuse (drugs or alcohol) *Dementia*Active psychosis –back to referrer for local service interventionClear Evidence of coercion or financial benefit(* back to referrer for local service intervention) Relative contraindications:Harmful use of drugs/alcoholLimited understanding/capacity despite educationAmbivalence
Refer toPsychology if
Relative contraindications as aboveSignificant BPSQ emotional distressSignificant anxiety/distress on contact with team members
Psychiatry ifPast history of psychosisPast history of inpatient psychiatric carePast history of suicidal ideation
Social Work ifSignificant social issues arising from BPSQSignificant financial issues arising from BPSQ
* Post out Psychological Wellbeing Index Ambivalence Questionnaire
Live Donor Health & Lifestyle Questionnaire
RECIPIENTS BPS SCREENING
NephrologistsPost out BPS questionnaire Screening
Absolute CI:*Active dependent substance misuse (drugs or alcohol) *Dementia*Active psychosis –back to referrer for local service interventionClear evidence of coercion or financial benefit(* back to referrer for local service intervention) Relative contraindications:Harmful use of drugs/alcoholLimited understanding/capacity despite educationAmbivalencePoor adherence/compliance
Refer to stepped Care Model +Social Work if
Screening questionnaire positiveSignificant social/financial issues
Psychology ifRelative contraindications as aboveSignificant BPSQ emotional distressSignificant anxiety/distress on contact with team members
Psychiatry ifPast 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
1.MOCA
2. Alcohol units/week
RECIPIENTS 2 yearly SCREENING
• MOCA • ALCOHOL UNITS
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.
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?