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.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?