Jody L. Jones, Ph.D. Clinical Psychologist University of Iowa Organ Transplant Center Psychological Disorders in the Transplant Population PTSD PTSD in Children PTSD in Caregivers Post-Transplant Psychological Disorders and Transplant Outcomes Treatments for PTSD The criteria for many psychiatric diagnosis include somatic symptoms that may overlap with the medical diagnosis. 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) 40-50% of transplant patients have been reported to suffer from clinical depression 38-50% of transplant patients have been reported to suffer from clinical anxiety Anecdotally, heart, liver, and kidney patients tend to suffer from depression, and lung patients tend to have higher anxiety. 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) A study of 191 heart transplant patients at the University of Pittsburgh found 19% of all patients had a lifetime history of MDD. Studies suggest that up to 20% of patients with ESRD have depression. A study published in 2012 found that in patients listed for liver transplant: 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) 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) 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) 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. 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 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 Difficulty falling or staying asleep Irritability Difficulty concentrating Hypervigilance Exaggerated startle response 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. 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) A diagnosis of PTSD is associated with increased rates of depression, substance abuse, and overall impairment in functioning (DSM-IV) Diagnostic criteria for PTSD are the same for children as adults. 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. Sleep disturbance may involve frightening dreams in which no clear perpetrator or event is involved. Night terrors are possible. (Tufnell and Dejong, 2008) 10-15% will have a delayed onset, developing six months or more after the event Symptoms may resolve after just a few days or weeks, but if untreated can last for years. Risk and resiliency factors include: 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) 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. Individual assessment of the child should include clinical observations of behavior. Play behavior and drawing may be more beneficial than interviewing. Engage in activities or initiate changes in routine that restore a sense of safety Normalize the symptoms and reassure about recovery As much as possible, resume normal routines and maintain consistency Develop practical strategies for dealing with symptoms such as hyperarousal and sleep disturbance Identify support within the family and community Tufnell and Dejong, 2008 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) Parents of pediatric transplant patients are considered an at-risk population. Risk factors for the development of PTSD in parents include: 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) 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) 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) Some studies have linked psychological distress pre- and post-transplant with increased rejection episodes and longer hospital stays. (Prieto et al, 2005) 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) 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. 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) 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. A history of a psychiatric condition prior to transplantation Low levels of social support A shorter waiting time prior to transplant Female gender 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. 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. The most commonly cited symptom of the PTSD was intrusive thoughts /flashbacks. (Dew et al., 2001) A 2002 study of 82 heart and lung transplant patients found that about 10% met criteria for PTSD. In this population, the patients with PTSD reported significantly lower quality of life than did those patients without PTSD. Quality of life for patients without PTSD nearly matched QoL ratings as those from a “normal” population. (Kollner et al., 2002) A 2012 study of 296 liver transplant recipients found that About 4% met criteria for “full” PTSD Over 5% met criteria for “partial” PTSD Risk factors in this population: higher MELD scores complications post-transplant Protective factors: higher education (SG Jin et al., 2012) 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) 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) 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. PTSD was also linked to lower posttransplant adherence, which increased morbidity. (Dew et al., 1999) 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 The goal of all desensitization protocols is to reduce the vividness of the memory or cognition. 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. Eye Movement Desensitization and Reprocessing (EMDR) 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. The patient reports the sensations, emotions, and impressions being experienced. The process is repeated over and over until the patient reports minimal distress related to the memory. The patient is instructed to rehearse a positive cognition in relation to the memory. Induction of deep relaxation? Increase in interhemispheric communication? Working memory account 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.