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Psychosocial Issues in the Assessment and Management of Patients Undergoing Lung Transplantation* FREE TO VIEW

Krista A. Barbour, PhD; James A. Blumenthal, PhD; Scott M. Palmer, MD, MHS, FCCP
Author and Funding Information

*From the Departments of Psychiatry and Behavioral Sciences (Drs. Barbour and Blumenthal), and Medicine (Dr. Palmer), Duke University Medical Center, Durham, NC.

Correspondence to: Krista A. Barbour, PhD, Box 3119, Duke University Medical Center, Durham, NC 27710; e-mail: krista.barbour@duke.edu



Chest. 2006;129(5):1367-1374. doi:10.1378/chest.129.5.1367
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This review examines psychosocial issues among lung transplant patients from the time of assessment through the posttransplant period. Although psychological factors are recognized as being important in the transplant evaluation, no standard approach to psychological assessment currently exists. Lung transplant candidates often experience high levels of psychological distress while awaiting transplant, and both pretransplant and posttransplant psychological functioning have been found to predict posttransplant quality of life, adherence to treatment, and, in some cases, medical outcomes. Given the limited long-term survival following transplantation, improving psychosocial functioning is essential for enhancing outcomes among lung transplant recipients. This review summarizes the extant literature on the psychosocial factors in lung transplantation and highlights several innovative efforts to improve psychological outcomes in this challenging patient population.

Figures in this Article

Lung transplantation is now a well-established treatment for patients with end-stage lung disease, with > 1,700 patients undergoing lung transplantation worldwide in 2004. The International Society for Heart and Lung Transplantation (ISHLT) guidelines1established specific criteria for the evaluation and selection of lung transplant recipients. In general, only patients with advanced lung disease and limited expected survival without undergoing transplantation are considered because of the overall poor long-term outcomes with lung transplantation. Currently, while small improvements in short-term lung transplant recipient survival are evident compared to prior years, long-term survival remains limited to approximately 50% at 5 years (Fig 1 for ISHLT survival data by era).2 Thus, given the significant risks for death before and after lung transplantation, it is not surprising that high levels of psychological distress have been reported in this population.3 Careful assessment and management of psychological functioning both before and after lung transplant, therefore, is critical to providing patients with the best possible posttransplant quality of life (QoL), and psychological and medical outcomes.

Psychosocial Evaluation

Given the relative scarcity of available organs for transplantation and the significant risk of morbidity and mortality associated with surgery, transplant candidates are carefully screened to assess medical and psychological comorbidities that might adversely affect posttransplant outcomes. Psychologists, social workers, and psychiatrists are important members of the multidisciplinary lung transplant team, and their psychosocial evaluations are an integral part of the candidate selection process. The purpose of these evaluations is not just to identify behavioral, psychological, and social contraindications to transplantation, but also to identify patients with a high degree of distress and to institute appropriate therapeutic interventions prior to their undergoing transplantation.

Although the ISHLT guidelines1 have identified active, unresolved psychosocial problems as being relative contraindications to lung transplantation, there is not uniform agreement on the assessment procedure or on the importance of specific psychosocial factors in the evaluation process. At our center, a psychosocial evaluation by a psychologist and social worker is a routine part of a comprehensive pretransplant assessment of each patient being considered for lung transplantation. A clinical interview is performed, along with the administration of a psychometric test battery. Both the patient and his or her caregiver (usually a spouse or other family member) are evaluated.

In our approach to the evaluation, we recognize that prospective lung transplant patients are not psychiatric patients. Lung transplant candidates typically have not sought mental health services, but rather have a debilitating and life-threatening physical illness that affects their physical and emotional functioning. Because of their desire to win acceptance from the transplant team, some patients may be guarded or minimize concerns. We seek to establish rapport and provide patients with an opportunity to share their concerns with a trained professional. A number of domains of functioning are typically assessed by interview and various psychometric measures (for a listing of recommended questionnaires see Table 1 ).49 It is our belief that the psychosocial transplant evaluation should include, at a minimum, a measure of mood, anxiety, QoL, and social support. Routine assessment of these variables across transplant centers will allow for greater standardization and thus will aid in the interpretation of results gleaned from the psychosocial evaluation of lung transplant patients.

Psychological Functioning:

The pretransplant evaluation and listing period is a particularly stressful time. The long, uncertain wait for a donor organ, the marked decline in functional capacity, restrictions in work and leisure time activities, the considerable financial burden, and the prospect of a complicated medication regimen after surgery combine to exert a profound strain on patients’ psychosocial adjustment. In fact, it appears that psychiatric disorders often develop following the onset of pulmonary disease, suggesting at least an indirect relation to the adjustment to illness.3

Thus, it is not surprising that the level of psychological distress experienced by patients during this period is significant. Parekh and colleagues10 assessed psychiatric functioning in 100 patients who had been listed for lung transplantation. The results indicated that 25% of the sample met the criteria for at least one anxiety or mood disorder. Of this subgroup, 28% met the criteria for two psychiatric disorders, with panic disorder and anxiety disorder not otherwise specified (ie, significant anxiety symptoms are present but do not meet the criteria for a specific, diagnosable anxiety disorder) being the most frequent diagnoses. Significantly, 36% of the patients who met the criteria for psychiatric disorder were not receiving mental health treatment at the time of assessment, suggesting that psychological distress may be undertreated in lung transplant patients and that there is a need for intervention in this population. Patients with psychiatric disorders also experienced worse QoL, physical functioning, and social support relative to patients with no psychiatric diagnosis.

Rates of psychological distress were found to be even higher in another sample of 70 patients listed for lung transplantation; 47% had a diagnosed psychiatric disorder such as major depressive disorder, anxiety disorders, and adjustment disorders.11In a study comparing 58 cystic fibrosis (CF) patients with 52 patients with other end-stage lung diseases (eg, COPD), the CF patients reported significantly less anxiety relative to the other patients,12 suggesting that native disease might moderate pretransplant psychological functioning. That is, it is possible that CF patients experience less distress as a result of having had to manage their disease for a significantly longer period of time.

Singer et al13utilized a novel approach to examining personality styles in a relatively large sample of patients (n = 243) undergoing evaluation for lung transplantation. Patients were administered a widely used 567-item standardized personality inventory, the Minnesota Multiphasic Personality Inventory, 2nd edition,14 and a cluster analysis was applied to the data in order to classify subgroups of patients. The authors identified personality profiles based on this analysis and found that 28% of the sample was characterized by marked psychological distress, including anxiety, depression, and somatic complaints. In summary, there is a high prevalence of psychological distress in patients undergoing evaluation for lung transplantation across multiple independent studies.

Adherence:

Given the importance of careful adherence to the posttransplant medical regimen for the survival of the graft, detailed information regarding patients’ history of adherence to medical treatment (eg, attending clinic visits, taking medication as prescribed, and participating in pulmonary rehabilitation) is crucial. In an examination of predictors of chronic allograft rejection in lung recipients, Husain and colleagues15 found that reduced levels of posttransplant immunosuppression were significantly more common in patients who subsequently developed bronchiolitis obliterans syndrome (the pulmonary specific manifestation of chronic allograft rejection). Importantly, the primary cause of the reduced levels observed was presumed to be due to nonadherence (compared to a deliberate decrease in immunosuppression for other reasons, such as infection). Thus, evidence of treatment nonadherence uncovered during the evaluation should be thoroughly explored and the demonstration of a period of adherence to medical recommendations should be considered a prerequisite for transplant listing.

Substance Use:

At most centers, patients listed for lung transplantation are required to be abstinent from tobacco use for a specified period of time (eg, 6 months). Because many patients who pursue lung transplants have a history of tobacco use, a thorough assessment of smoking history is necessary in an effort to predict the risk of relapse. Important variables to consider include the patient’s pattern of use (eg, the amount smoked per day and triggers for use), the nature of quit attempts, the manner in which the patient quit using tobacco, participation in smoking cessation programs or use of smoking cessation aids (eg, nicotine replacement therapy), length of abstinence, current craving for cigarettes, and the availability of coping skills to maintain abstinence. In patients who are considered to be at higher risk for relapse, longer periods of abstinence might be appropriate.

The assessment of the use of other substances is also important as alcohol and illegal or prescription drug use can interfere with transplant medications and/or adherence to the transplant regimen in general. Current maladaptive drug or alcohol use must be treated, and a period of abstinence must be demonstrated prior to listing the patient for transplantation.

Understanding of and Motivation for Transplantation:

The evaluation of the patient’s level of understanding of and attitude toward lung transplantation is a critical aspect of the informed consent process. Patient variables such as educational attainment and cognitive functioning should be taken into consideration because they can affect a patient’s ability to adhere to the complex transplant regimen. A patient with a low education level or limited intellectual capacity will need the support of a caregiver who is able to fully understand the requirements of lung transplantation. In addition, there are data to suggest that patients with end-stage lung disease demonstrate impairment in aspects of verbal memory relative to normative samples.16 This finding underscores the need for a competent caregiver as well as the importance of the repetition of transplant-related information and communication in multiple modalities (eg, written and verbal) by transplant team members.

In addition to an understanding of the transplant process, a patient’s level of motivation for proceeding with the surgery also should be ascertained. Although a certain degree of ambivalence is to be expected when deciding whether or not to undergo a major surgical procedure that is associated with a number of risks, a high level of uncertainty regarding the value of lung transplantation should be explored further, and the patient should be encouraged to continue to carefully consider the decision by weighing the potential risks and benefits of transplantation.

Social Support/Caregiver Assessment:

Because the perioperative period is a time during which a high degree of patient care is required, the success of lung transplantation depends in part on the presence of a dedicated caregiver. The psychosocial evaluation provides an opportunity to assess the commitment level of the potential caregiver, as well as the ability of that individual to provide the level of care required. It also is important to assess the potential caregiver’s psychological functioning, as caregivers also are vulnerable to high levels of psychological distress. For example, in one study of caregivers of heart transplant recipients, Stukas and colleagues17 demonstrated that 8% of the caregivers met the full criteria for posttraumatic stress disorder secondary to the transplant experience (PTSD-T), and 11% met partial criteria for this disorder.

In addition, coping style has been demonstrated to be related to psychological functioning in the caregivers of patients undergoing evaluation for lung transplantation, such that the use of passive coping strategies was associated with higher levels of psychological distress.18Alternatively, Burker and colleagues19found that a “planning” coping style was correlated with less psychological distress in heart transplant caregivers. The reciprocal role that coping plays between patients and caregivers also should be considered during the evaluation. In an investigation of the relationship between patient and caregiver coping and QoL in 114 patient-caregiver dyads,20 higher patient QoL was associated with higher caregiver QoL. This finding highlights the importance of the relationship between patient and caregiver, and the role it plays in the overall success of transplantation. At Duke University Medical Center, we require the development of a formal support plan for the perioperative period for patients. In addition, we occasionally recommend treatment for caregivers who demonstrate a significant degree of psychological distress, in the hopes of improving caregiver QoL as well as posttransplant outcomes.

Psychosocial Contraindications for Lung Transplantation

Although psychosocial evaluations are routinely used at most centers to aid in the selection of lung transplant candidates, the degree to which psychosocial factors should be used to exclude patients from undergoing the procedure continues to be debated among members of the organ transplant community.21 However, concerns such as unhealthy lifestyle behaviors (eg, continued tobacco use), nonadherence to treatment, or lack of a reliable caregiver are significant risk factors for poor posttransplant outcomes that patients must correct prior to being listed for transplantation. The psychosocial contraindications to lung transplantation at our center are summarized in Table 2 . Consistent with the view held by most US transplant centers,,1 we think that patients should not be denied lung transplantation without the opportunity to resolve psychosocial concerns, but repeated episodes of nonadherence, alcohol abuse, or continued use of tobacco often exclude patients from further consideration of lung transplantation.

Outcome of the Psychosocial Evaluation

As members of a multidisciplinary transplant team, psychological service providers play an important role in the selection of patients being listed for lung transplantation. Patients are often advised to initiate treatment for mood disorders or substance abuse, to formalize a more viable support plan, or to modify their lifestyle health habits. One concern regarding the recommendations for psychological treatment is that, unless patients live near the transplant center, the transplant team cannot directly provide psychological services and can only refer patients to mental health-care resources in their area. Such areas are often rural and offer little in the way of psychological treatment options. Treatment alternatives to resolve this barrier, such as telephone or Web-based interventions have been developed and are discussed later in this review.

Psychological Outcomes

Given the potential complications and risks associated with organ transplantation, it is not surprising that psychiatric comorbidities also have been observed in patients following transplantation. In an investigation of psychological functioning in a sample of 50 lung and heart-lung transplant recipients,2226.5% of patients endorsed clinically significant levels of depressive symptoms, with more than one third of the sample experiencing clinically significant anxiety. Only the mean anxiety level of the sample was substantially elevated relative to normative samples. Although other investigators2324 have found lower levels of anxiety and depression in their samples (eg, with roughly 10% of patients endorsing clinically significant anxiety or depression), taken together the results suggest that a significant minority of lung transplant recipients continue to experience psychological distress following transplant surgery.

Cohen and colleagues25 found that psychiatric status during the pretransplant period was related to posttransplant adjustment and QoL in lung patients. In support of this finding, Stilley and colleagues22 reported that lung and heart-lung transplant recipients with a history of depression or anxiety prior to undergoing transplantation were significantly more likely to report psychological distress posttransplant relative to patients without such a history.

The diagnosis of PTSD-T has gained attention in the literature for both heart and lung-transplant patients. Stukas and colleagues17 found that during the first year following heart transplantation 11% of the recipients met full diagnostic criteria for PTSD-T, and an additional 5% of recipients met enough criteria to be considered probable cases. In a study conducted by Kollner and colleagues,26 the prevalence of PTSD-T was found to be comparable in a sample of heart and lung transplant recipients. Moreover, these authors reported that patients in whom PTSD-T was diagnosed were significantly more likely to experience lower QoL relative to patients who did not meet the diagnostic criteria for the disorder.

Stukas et al17 found that a history of a psychiatric condition prior to undergoing transplantation and low levels of social support following transplantation were associated with an increased risk for the development of PTSD-T. In addition, the transplant stressors most frequently reported by patients with PTSD-T in this sample were learning about the need for transplantation and the waiting period. Interestingly, the length of the waiting period was associated with posttransplant anxiety in a sample of heart transplant patients, such that when the period was relatively brief these patients were more likely to experience PTSD-T and other anxiety symptoms.27 This result suggests that patients who do not receive adequate time on the waiting list to adjust to the idea of undergoing transplantation may be at risk for developing anxiety disorders during the posttransplant period.

In summary, many transplant patients continue to experience psychiatric distress after undergoing transplantation. Thus, it is important to recognize the need for the continued evaluation of functioning during the posttransplant period. The results of such an evaluation would serve to inform interventions, with the goal of enhancing QoL through the treatment of active psychological or behavioral conditions. Evidence of increased mortality in patients in whom PTSD-T was diagnosed,28 for example, highlights the need for the continued monitoring of psychiatric disorders during this phase of the transplantation process.

Medical Outcomes

The data linking psychological distress in patients awaiting transplantation to adverse medical outcomes during the posttransplant period vary, depending on the outcome in question. For instance, previous studies have found that psychiatric illness and other psychosocial problems are related to poor posttransplant outcomes such as more frequent rejection episodes29and increased length of hospitalization in heart patients.30In addition, a recent cross-sectional study of 50 lung and heart-lung recipients31 demonstrated that significant anxiety and depressive symptoms during the pretransplant period were associated with the increased reporting of physical symptoms and impairment, even after controlling for concurrent medical complications.

Although Prieto et al32found that pretransplant depression predicted posttransplant mortality in bone marrow transplant recipients, evidence for an association between psychological variables and survival in lung transplant recipients is lacking. In one study,33 pretransplant quality of well-being predicted survival posttransplant, but depression did not. Woodman and colleagues11 examined the association between pretransplantation psychiatric functioning and 1-year survival in 30 lung recipients. An anxiety or depressive disorder was diagnosed in one half of the patient sample prior to their undergoing transplantation. It was found that the presence of a pretransplant psychiatric diagnosis did not adversely affect survival at 1 year posttransplant. It is possible that only specific psychiatric diagnoses are related to survival. For example, Dew and colleagues28 found that the risk of mortality was increased in heart patients in whom PTSD-T was diagnosed.

Research supports the value of other psychosocial variables in the prediction of posttransplant survival. Burker and colleagues34 examined the construct of the health locus of control in a sample of 100 lung transplant candidates. The term health locus of control refers to a patient’s attribution for health outcomes to his or her own behavior (ie, internal health locus of control) vs an external source. The results indicated that patients with a tendency to endorse an internal locus of control survived longer posttransplant relative to patients with lower scores on the internal locus of control measure. The assessment of novel constructs such as the health locus of control should be further examined in lung transplant patients.

An important factor in the success of organ transplantation is patients’ adherence to the transplantation regimen. Although most of what is known about treatment adherence in transplant recipients has been gleaned from the examination of heart, liver, and renal patients, nonadherence rates in groups of patients undergoing lung transplantation appear to be comparable to those in other organ transplantation groups.35Adherence to the posttransplant regimen tends to decline over time.36This may be due in part to dissatisfaction with symptoms related to immunosuppression, which usually worsen over time.37

A history of nonadherence (eg, missed clinic visits or dietary nonadherence), age (with children, adolescents, and older adults being less adherent), being unmarried, poor social support, substance abuse, psychological distress, and denial represent risk factors for posttransplant adherence.38Moreover, evidence exists for a dose-response relationship between risk factors and the subsequent level of nonadherence. That is, as the number of risk factors for nonadherence to the regimen increases, the more likely it is that patients will demonstrate significant adherence problems.39

Adherence as a Mediator of the Psychological Distress-Medical Outcome Relationship

It is possible that the observed relationship between pretransplant psychological functioning and posttransplant outcomes is mediated by adherence to treatment. That is, patients experiencing psychological distress may be less likely to adhere to the complex transplant regimen, which in turn negatively affects medical outcomes. Support for this idea comes from research showing that depression is predictive of nonadherence to treatment regimens across a variety of medical diagnoses.40Although they did not test a mediational model, Dew and colleagues41 found that both adherence and psychological functioning (ie, PTSD-T) predicted morbidity and mortality up to 3 years posttransplant in heart patients. Future research should focus on the interaction of psychological functioning and treatment adherence on medical outcomes.

Despite the relatively high levels of psychological distress among lung transplant patients and the potential value of psychosocial interventions in treating psychological distress in this population, little research has been conducted on this topic.42Because transplant candidates and recipients often live far from the transplant center, there is a great need for novel treatment modalities that are aimed at improving or maintaining psychological functioning in transplant patients. Because patients who have undergone telephone-based interventions have reported levels of satisfaction with this format that are comparable to face-to-face counseling,43a telephone-based psychosocial intervention may be a practical option for patients who would benefit from treatment but who live some distance from the transplant center. In 2002, we conducted a pilot study44 of a telephone-based psychosocial intervention in 71 patients who were listed for lung transplantation at Duke University Medical Center. Patients in the trial were randomized to receive 8 weeks of a stress management intervention conducted by telephone or to usual medical care (UMC). At the end of the treatment period, patients in the intervention group reported improved overall well-being, increased social support, decreased psychological distress, and fewer somatic complaints relative to the UMC patients.

As a result of these encouraging findings, we performed a dual-site (Duke University and Washington University) randomized clinical trial45of 328 patients awaiting lung transplantation. Patients were randomized to receive either a 12-session telephone-based coping skills training (CST) or to UMC. The CST condition included sessions on relaxation strategies, cognitive restructuring, and relapse prevention. Preliminary results indicated that patients in the CST condition demonstrated lower scores on measures of perceived stress, anxiety, and depressive symptoms relative to UMC patients but similar pretransplant survival times. Finally, Rodrigue and colleagues46 also completed a telephone-based QoL intervention in 35 patients who were listed for lung transplantation. Patients were randomized to participate in telephone therapy sessions focused on either QoL issues (based on concerns identified by each patient during the first session) or to receive supportive therapy (eg, active listening of patient concerns and education regarding transplantation). The sample was followed up at 1 and 3 months postintervention. At follow-up, the results indicated that patients who received the QoL intervention were more likely to experience improvements in mood, QoL, and social intimacy relative to patients in the supportive therapy condition. The results of this study provide additional support for the idea that the delivery of brief telephone-based interventions can improve psychosocial functioning in patients awaiting lung transplantation.

As an alternative to telephone intervention, researchers have utilized the Internet to deliver treatment to heart transplant recipients and their caregivers.47 This intervention included multiple components, such as interactive “workshops” and online discussion groups. Relative to a comparison group not exposed to the intervention, patients and caregivers who participated in the program demonstrated a significant decrease in anxiety and depression, as well as improvement in QoL. Thus, an Internet-based intervention may provide another alternative to face-to-face treatment for psychological distress in transplant patients.

In the present review, we have highlighted psychosocial functioning in lung transplant patients throughout the transplant process. From the time of evaluation through the posttransplant period, it should be clear that patients experience a high degree of psychological distress and that the psychiatric status of patients has important implications for transplant outcomes. The diagnosis and treatment of psychological distress in this population has not received the recognition it deserves. Several studies have demonstrated that telephone-based psychosocial interventions show great promise in terms of ease of delivery and the potential to improve psychological functioning in lung transplant candidates. Greater attention to psychosocial factors throughout the transplant process has the potential to greatly improve both psychological and medical outcomes, allowing patients to experience the full benefits of their life-saving transplant.

Abbreviations: CF = cystic fibrosis; CST = coping skills training; ISHLT = International Society for Heart and Lung Transplantation; PTSD-T = posttraumatic stress disorder secondary to the transplant experience; QoL = quality of life; UMC = usual medical care

The authors report no involvement in any organization with a direct financial interest in the subject of the manuscript.

Figure Jump LinkFigure 1. Survival after lung transplantation by era.Grahic Jump Location
Table Graphic Jump Location
Table 1. Common Psychometric Assessment Instruments*
* 

BDI = Beck depression inventory; STAI = state-trait anxiety inventory; HTSS = heart transplant stressor scale; MCMQ = medical coping modes questionnaire; PQLS = pulmonary-specific quality-of-life scale; PSSS = perceived social support scale.

 

While the HTSS was developed for use with heart transplant patients, the majority of the items also are relevant for patients being considered for lung transplantation.

Table Graphic Jump Location
Table 2. Psychosocial Contraindications for Lung Transplantation-Duke University Medical Center
. The American Society for Transplant Physicians (ASTP)/ American Thoracic Society (ATS)/ European Respiratory Society (ERS)/ International Society for Heart and Lung Transplantation (ISHLT) (1998) International guidelines for the selection of lung transplant candidates.Am J Respir Crit Care Med158,335-339. [PubMed]
 
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Figures

Figure Jump LinkFigure 1. Survival after lung transplantation by era.Grahic Jump Location

Tables

Table Graphic Jump Location
Table 1. Common Psychometric Assessment Instruments*
* 

BDI = Beck depression inventory; STAI = state-trait anxiety inventory; HTSS = heart transplant stressor scale; MCMQ = medical coping modes questionnaire; PQLS = pulmonary-specific quality-of-life scale; PSSS = perceived social support scale.

 

While the HTSS was developed for use with heart transplant patients, the majority of the items also are relevant for patients being considered for lung transplantation.

Table Graphic Jump Location
Table 2. Psychosocial Contraindications for Lung Transplantation-Duke University Medical Center

References

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