Jody L. Jones, Ph.D.
Clinical Psychologist
University of Iowa Organ Transplant Center
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Psychological Disorders in the Transplant
Population
PTSD
 PTSD in Children
 PTSD in Caregivers
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Post-Transplant Psychological Disorders and
Transplant Outcomes
Treatments for PTSD
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The criteria for many psychiatric diagnosis include
somatic symptoms that may overlap with the medical
diagnosis.
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Conservatively, it is best to diagnose psychiatric
disorders using the following guidelines:
 Base the diagnosis primarily on cognitive symptoms
 Somatic symptoms can be used in diagnosis if they are:
▪ severe
▪ disproportionate to the medical illness
▪ temporally related to the affective/cognitive symptoms
(Cavanaugh, 1994)
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40-50% of transplant patients have been reported to suffer from
clinical depression
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38-50% of transplant patients have been reported to suffer from
clinical anxiety
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Anecdotally, heart, liver, and kidney patients tend to suffer from
depression, and lung patients tend to have higher anxiety.
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A study examining 311 transplant candidates for all organs found
that
 60% met criteria for Axis I disorders (linked with later adjustment
problems)
 32% met criteria for Axis II disorders (linked with later compliance
problems)
 25% met criteria for both Axis I and II disorders
(Chako et al., 1996)
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A study of 191 heart transplant patients at the University
of Pittsburgh found 19% of all patients had a lifetime
history of MDD.
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Studies suggest that up to 20% of patients with ESRD
have depression.
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A study published in 2012 found that in patients listed for
liver transplant:
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64% demonstrated minimal indicators of depression
26% showed mild indications of depression
8% showed moderate indications of depression
2% presented severe indicators of depression
(Santos et al., 2012)
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In a sample of 100 patients listed for lung
transplant, 25 met criteria for at least one
anxiety or mood disorder. Of this group, another
quarter met criteria for two disorders, with panic
disorder and anxiety disorder being the most
common.
(Parekh et al., 2003)
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In another sample of 70 patients listed for lung
transplantation, almost half were diagnosed
with a psychiatric disorder such as anxiety
disorder or depression.
(Woodman et al., 1999)
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The essential feature of PTSD includes three
symptom clusters:
 Reexperiencing
 Avoidance
 Hyperarousal
The individual’s response to the event must involve
intense fear, helplessness, or horror
 Must cause clinically significant distress or
impairment in social, occupational, or other important
areas of functioning
 Lifetime prevalence rate is 1-14% in community
samples.
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Recurrent and upsetting recollections of the
event
Repeated distressing dreams of the event
Flashbacks (feeling as if the event were
recurring)
Intense distress when exposed to reminders
of the event
Physiological reactivity to reminders of the
event
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Efforts to avoid thoughts or places associated
with the event
Inability to recall important aspects of the
event
Diminished interest in activities
Feelings of detachment from others
Restricted range of affect
Sense of a foreshortened future
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Difficulty falling or staying asleep
Irritability
Difficulty concentrating
Hypervigilance
Exaggerated startle response
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In contrast to a flashback, future-oriented
images—flashforward cognitions—are those
in which a specific memory is elaborated
upon to create an even more distressing
outcome.
 A formerly-suicidal patient imagines having
carried out the plan
 A stroke survivor envisions having another stroke
 A transplant recipient imagines the organ failing
and requiring another.
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Most commonly cited precipitants of PTSD
symptoms (in order of frequency of report):
 The waiting time
 Surgery
 Postoperative recovery
 Learning about the need for a transplant
(Dew et al., 2001)
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A diagnosis of PTSD is associated with
increased rates of depression, substance
abuse, and overall impairment in functioning
(DSM-IV)
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Diagnostic criteria for PTSD are the same for
children as adults.
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Distressing recollections in children may
manifest as repetitive play in which traumatic
themes are expressed. In fact, some children will
actually reenact frightening events in their play.
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Sleep disturbance may involve frightening
dreams in which no clear perpetrator or event is
involved. Night terrors are possible.
(Tufnell and Dejong, 2008)
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10-15% will have a delayed onset, developing six
months or more after the event
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Symptoms may resolve after just a few days or weeks,
but if untreated can last for years.
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Risk and resiliency factors include:
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Age at exposure (younger children more vulnerable)
Presence of parental mental health problems
Presence of psychopathology before the trauma
Female gender (increases likelihood of PTSD)
Family/social/cultural support
(Tufnell and Dejong, 2008)
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Interviewing should begin in the presence of
parents.
 Children sometimes will underreport symptoms
because they fear distressing their parents.
 Parents may underestimate the degree to which the
child is aware and has been affected by the situation,
particularly if the parents themselves are experiencing
symptoms of PTSD.
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Individual assessment of the child should include
clinical observations of behavior. Play behavior
and drawing may be more beneficial than
interviewing.
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Engage in activities or initiate changes in routine that
restore a sense of safety
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Normalize the symptoms and reassure about recovery
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As much as possible, resume normal routines and
maintain consistency
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Develop practical strategies for dealing with
symptoms such as hyperarousal and sleep disturbance
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Identify support within the family and community
Tufnell and Dejong, 2008
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For caregivers, the type of coping used affects caregiver
adjustment and can influence the patient’s perception of quality of
life:
 “Passive” coping strategies in the caregivers of transplant patients
have resulted in reports of higher levels of distress.
(Claar et al., 2005)
 A “planning” coping style was correlated with less distress in the
caregivers of heart transplant patients.
(Burker et al., 2005)
 In lung transplant patients and their caregivers, higher quality of life in
the caregiver was associated with higher quality of life in the patient,
suggesting that distress and coping have a reciprocal effects between
patients and caregivers.
(Mayskovsky et al., 2005)
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Parents of pediatric transplant patients are
considered an at-risk population.
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Risk factors for the development of PTSD in parents
include:
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Female gender
A history of MDD or GAD
Lower friend support
Lower sense of mastery
A study of parents of liver, kidney, and heart
transplant recipients found that 27% met criteria for
PTSD
(Young et al., 2003)
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Interestingly, a 1999 study found very few instances of both the
recipient and parent having PTSD in a group of pediatric heart
transplant recipients.
(Stukas et al., 1999)
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A 2007 study found that one-fifth of a sample of 52 parents of
children undergoing heart transplant suffered from PTSD, which is
almost 2.5 times the lifetime prevalence rate in the general
population.
 The post-transplant period was the time of most significant parental
stress.
 Passage of time after the transplant surgery did not diminish
symptoms to a significant degree. Reasons for this include:
▪ External support subsides after acute crisis
▪ Caregiver stresses increase with assumption of greater responsibility
▪ Long-term management of the illness/condition becomes reality
(Farley et al., 2007)
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Some studies have linked psychological distress pre- and
post-transplant with increased rejection episodes and
longer hospital stays.
(Prieto et al, 2005)
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Lung/Heart-Lung:
 In a sample of 50 lung and heart-lung transplant recipients, one
quater endorsed clinically significant depressive symptoms, and
over one-third reported clinically significant anxiety.
 The recipients who had experienced clinical anxiety or
depression prior to transplant were significantly more likely to
have problems afterwards.
(Stukas et al., 1999)
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Kidney:
 9-13% of patients at three years post-kidney transplant were found to
have a cumulative prevalence of depression according to data from
47,000 patients from the United States Renal Data System.
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Heart:
 Adjustment disorders were much more common than generalized
anxiety disorder.
 After the transplant, about 14% experienced a new episode of MDD
within 12-18 months of the surgery.
 By three years after the transplant, 25.5% had experienced MDD. (A
lifetime rate of MDD is around 17%; in patients with chronic disease, a
24% lifetime rate has been cited.)
(Dew et al., 2001)
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Liver:
 Rates of depression after liver transplantation have been
cited around 30%.
 A recent survey of patients who underwent transplant for
acute liver failure identified anxiety symptoms in 33% of
the patients and depression was found in 46%, as
measured by the BDI.
(Guimaro et al., 2011)
 A 2006 study found that no difference was identified
between the quality of life reports from patients
undergoing transplant for acute versus chronic liver
failure.
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A history of a psychiatric condition prior to
transplantation
Low levels of social support
A shorter waiting time prior to transplant
Female gender
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In a prospective study of 191 heart transplant recipients
who were followed for three years after the surgery, 17%
were ultimately discovered to have PTSD.
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All but one case of PTSD developed within the first year of
the transplant.
 Two-thirds of this population developed PTSD in the first six
months.
 The last third, developed in the second six months, is
considered delayed onset.
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The most commonly cited symptom of the PTSD was
intrusive thoughts /flashbacks.
(Dew et al., 2001)
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A 2002 study of 82 heart and lung transplant
patients found that about 10% met criteria for
PTSD.
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In this population, the patients with PTSD
reported significantly lower quality of life than
did those patients without PTSD.
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Quality of life for patients without PTSD nearly
matched QoL ratings as those from a “normal”
population.
(Kollner et al., 2002)
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A 2012 study of 296 liver transplant recipients
found that
 About 4% met criteria for “full” PTSD
 Over 5% met criteria for “partial” PTSD
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Risk factors in this population:
 higher MELD scores
 complications post-transplant
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Protective factors:
 higher education
(SG Jin et al., 2012)
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PTSD after VAD
 10-17% of patients with an implantable device were
found in one study to suffer from PTSD
 A 2005 study found that none of the 26 patients who
had been implanted with a VAD satisfied criteria for
PTSD, but six of the caregivers of this cohort did.
(Bunzel et al., 2005)
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PTSD and dialysis
 10% of HD patients were discovered to suffer from
PTSD in a 2007 study.
 The lifetime prevalence in this study was around 17%.
(Tagay et al., 2007)
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PTSD was directly associated with
heightened risk of mortality in heart
transplant recipients, even after intermediate
co-morbidities were controlled. These deaths
were not the result of suicide.
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PTSD was also linked to lower posttransplant adherence, which increased
morbidity.
(Dew et al., 1999)
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Can be as effective in children as adults.
Involves three phases:
 Stabilization
▪ Enhancing coping mechanisms
▪ Building self-esteem
▪ Improving control over emotional responses
 Desensitization
▪ CBT
▪ EMDR
 Re-integration
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The goal of all desensitization protocols is to reduce
the vividness of the memory or cognition.
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Cognitive-Behavioral Therapy (CBT)
 Recall the distressing event (imaginal exposure) in a
situation incompatible with anxiety (during a relaxation
exercise) to allow for cognitive restructuring of the event.
Exposure is usually prolonged and repeated; personal
meanings of the event are “recoded” during this time.
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Eye Movement Desensitization and Reprocessing
(EMDR)
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The patient is asked to hold the memory in mind while
20 side-to-side eye movements are elicited through
watching the therapist’s hand or lights move back and
forth.
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The patient reports the sensations, emotions, and
impressions being experienced.
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The process is repeated over and over until the patient
reports minimal distress related to the memory.
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The patient is instructed to rehearse a positive
cognition in relation to the memory.
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Induction of deep relaxation?
Increase in interhemispheric communication?
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Working memory account
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 Keeping memory intact and making eye
movements tax the working memory
 With limited memory resources, images lose
vividness and consequently, emotional impact
(Gunter and Bodner, 2008)
For your attention, for the work you do, for making transplantation the
amazing field it is, for helping to save lives, for being team players, for
being kind to people in need, for bringing humor into our sometimes dark
and sad days, for coming back for more even after you think you cannot do
it any longer.