A qualitative exploration of the feasibility and acceptability of Meaning-Centered Psychotherapy for Cancer Caregivers.

OBJECTIVE: Caregivers of patients with cancer are at significant risk for existential distress. Such distress negatively impacts caregivers' quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers. METHOD: Nine caregivers of patients with glioblastoma multiforme (GBM) enrolled in a pilot randomized controlled trial evaluating the feasibility, acceptability, and effects of MCP-C, and completed in-depth interviews about their experience in the therapy. One focus group with three MCP-C interventionists was also completed. RESULTS: Four key themes emerged from interviews: (1) MCP-C validated caregivers' experience of caregiving; (2) MCP-C helped participants reframe their "caregiving identity" as a facet of their larger self-identity, by placing caregiving in the context of their life's journey; (3) MCP-C enabled caregivers to find ways to assert their agency through caregiving; and (4) the structure and sequence of sessions made MCP-C accessible and feasible. Feedback from interventionists highlighted several potential manual changes and overall ways in which MCP-C can help facilitate caregivers' openness to discussing death and engaging in advanced care planning discussions with the patient. SIGNIFICANCE OF RESULTS: The overarching goal of MCP-C is to allow caregivers to concurrently experience meaning and suffering; the intervention does not seek to deny the reality of challenges endured by caregivers, but instead to foster a connection to meaning and purpose alongside their suffering. Through in-depth interviews with caregivers and a focus group with MCP interventionists, we have refined and improved our MCP-C manual so that it can most effectively assist caregivers in experiencing meaning and purpose, despite inevitable suffering.

Mental health care in oncology. Contemporary perspective on the psychosocial burden of cancer and evidence-based interventions.

With cancer incidence increasing over time worldwide, attention to the burden of psychiatric and psychosocial consequences of the disease is now mandatory for both cancer and mental health care professionals. Psychiatric disorders have been shown to affect at least 30-35% of cancer patients during all phases of the disease trajectory, and differ in nature according to stage and type of cancer. Other clinically relevant distressing psychosocial and existential conditions (e.g. demoralisation, health anxiety, loss of meaning and existential distress) not included as 'disorders' in the usual diagnostic and nosological systems (i.e. meta-diagnostic conditions) have also been shown to be present in another 15-20% of cancer patients. In this editorial, we will present a summary of the extensive literature regarding the epidemiology of the several psychosocial disorders affecting cancer patients as a cause of distress and burden to be taken into consideration and addressed in cancer care through evidence-based intervention.

Efficacy of meaning-centered group psychotherapy for cancer survivors: a randomized controlled trial.

BACKGROUND: The aim of this study was to assess the efficacy of meaning-centered group psychotherapy for cancer survivors (MCGP-CS) to improve personal meaning, compared with supportive group psychotherapy (SGP) and care as usual (CAU). METHOD: A total of 170 cancer survivors were randomly assigned to one of the three study arms: MCGP-CS (n = 57); SGP (n = 56); CAU (n = 57). The primary outcome measure was the Personal Meaning Profile (PMP; total score). Secondary outcome measures were subscales of the PMP, psychological well-being (Scales of Psychological Well-being; SPWB), post-traumatic growth (Posttraumatic Growth Inventory), Mental Adjustment to Cancer (MAC), optimism (Life Orientation Test-Revised), hopelessness (Beck's Hopelessness Scale), psychological distress (anxiety and depression, Hospital Anxiety and Depression Scale; HADS) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; EORTC QLQ-C30). Outcome measures were assessed before randomization, post-intervention, and after 3 and 6 months of follow-up (FU). RESULTS: Linear mixed model analyses (intention-to-treat) showed significant differences between MCGP-CS, SGP and CAU on the total PMP score, and on (sub)scales of the PMP, SPWB, MAC and HADS. Post-hoc analyses showed significantly stronger treatment effects of MCGP-CS compared with CAU on personal meaning (d = 0.81), goal-orientedness (d = 1.07), positive relations (d = 0.59), purpose in life (d = 0.69); fighting spirit (d = 0.61) (post-intervention) and helpless/hopeless (d = -0.87) (3 months FU); and distress (d = -0.6) and depression (d = -0.38) (6 months FU). Significantly stronger effects of MCGP-CS compared with SGP were found on personal growth (d = 0.57) (3 months FU) and environmental mastery (d = 0.66) (6 months FU). CONCLUSIONS: MCGP-CS is an effective intervention for cancer survivors to improve personal meaning, psychological well-being and mental adjustment to cancer in the short term, and to reduce psychological distress in the long run.

Cancer-related fatigue: prevalence of proposed diagnostic criteria in a United States sample of cancer survivors.

PURPOSE: To evaluate the proposed cancer-related fatigue (CRF) diagnostic criteria in a sample of cancer survivors. More accurate prevalence estimates of CRF may result in improved diagnosis and management of one of the most common symptoms associated with cancer and its treatment. METHODS: Three hundred seventy-nine individuals who had been treated with chemotherapy, either alone or in combination with radiation therapy, were surveyed. Patients were asked background questions about their current condition, their medical history, and the frequency of fatigue during their chemotherapy. Additionally, patients who reported experiencing fatigue at least a few days each month during treatment were asked a series of questions about the impact of fatigue on their daily functioning. RESULTS: One hundred forty-one (37%) individuals reported at least 2 weeks of fatigue in the previous month. Of the respondents who had received their last treatment more than 5 years ago, 33% still reported at least a 2-week period of fatigue in the month before the interview. Evaluation of the proposed criteria revealed that 17% of respondents met at least two criteria for CRF. CONCLUSION: The prevalence of diagnosable CRF in the individuals in this sample, most of whom had completed treatment more than 1 year ago, was 17%-lower than expected based on previous reports that have used less-strict criteria. In a sizable number of people, CRF persists well beyond active treatment and should be a focus of intervention. Although they will require replication in other samples and clinical validation, these formal diagnostic criteria can be a step toward common language and a better understanding of the severity range and persistence of CRF.

A randomized, double-blind, placebo-controlled trial of psychostimulants for the treatment of fatigue in ambulatory patients with human immunodeficiency virus disease.

BACKGROUND: Fatigue is a commonly encountered symptom of human immunodeficiency virus (HIV) disease, associated with significant psychological and functional morbidity and poor quality of life. Preliminary studies on the treatment of fatigue from the cancer and multiple sclerosis literature suggest that psychostimulants may be effective in reducing fatigue. OBJECTIVE: To compare the efficacy of 2 psychostimulant medications, methylphenidate hydrochloride (Ritalin) and pemoline (Cylert), with a placebo intervention for the treatment of fatigue in patients with HIV disease. METHODS: In this double-blind trial, 144 ambulatory patients with HIV disease and persistent and severe fatigue were randomized to treatment with methylphenidate, pemoline, or placebo. Medications were titrated up to a maximum dose of 60 mg of methlyphenidate hydrochloride, 150 mg of pemoline, or 8 capsules of placebo daily. Fatigue was measured using 2 self-reported rating scales, the Piper Fatigue Scale (PFS) and the Visual Analogue Scale for Fatigue (VAS-F). We also used the timed isometric unilateral straight leg-raising task, a measure of muscular endurance. Quality-of-life and psychological well-being measures included the Beck Depression Inventory, the Brief Symptom Inventory, and the 36-Item Short-Form Medical Outcomes Study Health Status Survey. Side effects were monitored using the Systematic Assessment for Treatment Emergent Events and the Extra-pyramidal Symptom Rating Scale. All measures were rated weekly. RESULTS: One hundred nine subjects completed the 6-week trial; 15 patients (41%) receiving methylphenidate and 12 patients (36%) receiving pemoline demonstrated clinically significant improvement compared with 6 patients (15%) receiving placebo. Patients receiving methylphenidate or pemoline demonstrated significantly more improvement in fatigue on several self-reported rating scales (PFS total score, P=.04; affective subscale, P=.008; sensory subscale, P=.04; and VAS-F energy subscale, P=.02). Analysis of the regression slopes by means of hierarchical linear modeling demonstrated a significantly greater rate of improvement in PFS total scores among patients receiving psychostimulants compared with the placebo group (P=.02). There were no significant differences in the efficacy between methlyphenidate and pemoline on any outcome measure studied. Improvement in fatigue was also significantly correlated with improvement in measures of depression, psychological distress, and overall quality of life. Severe side effects were relatively uncommon among this sample, and only hyperactivity or jitteriness occurred significantly more often among subjects receiving active medication. CONCLUSIONS: Many patients with HIV- and acquired immunodeficiency syndrome-unrelated fatigue respond favorably to treatment with methylphenidate or pemoline. Both psychostimulants appear to be equally effective and significantly superior to placebo in decreasing fatigue severity with minimal side effects. Moreover, improvement of fatigue was significantly associated with improved quality of life and decreased levels of depression and psychological distress.

The use of highly active antiretroviral therapy (HAART) in patients with advanced HIV infection: impact on medical, palliative care, and quality of life outcomes.

The effect of highly active antiretroviral therapy (HAART) in the treatment of HIV infection is usually measured by survival, CD4 lymphocyte counts, HIV-1 RNA viral load testing, and the occurrence of opportunistic infections. This pilot study sought to measure the impact of HAART treatments on a wide range of clinical outcomes and psychological variables in a sample of patients with advanced HIV infection. Seventy patients with advanced AIDS who were protease inhibitor naïve were started on HAART regimens. Patients were admitted to an AIDS inpatient unit of a long-term care facility that provides treatment and palliative care. All patients were diagnosed with AIDS, had CD4 cell counts below 300/cc(3), and had a projected survival of greater than one month. Patients were started on triple-drug HAART regimens with daily medical supervision and observation. In addition to standard clinical and laboratory markers, a series of observer-rated and self-report instruments were used to measure various physical and psychological factors (e.g., pain and symptom distress, psychological well-being, depression). Data were collected at baseline and after 1 and 3 months of HAART therapy. As expected, the CD4 count increased and viral load levels decreased significantly over the 3-month study period. In addition, patients improved significantly in body weight, and serum albumin and ferritin levels. The only psychosocial measure that improved significantly with treatment was depression. Ratings of pain intensity, physical and psychological symptom distress, and overall quality of life did not change. Of the 70 patients studied, 84.3% were still alive after the 3-month study period. Of these, 6 (8.6%) were discharged to community. However, 17 surviving patients (24.3%) had HAART regimens discontinued due to drug intolerance and 11 patients (15.7%) expired during the study period. While these data are preliminary, HAART regimens appear to have positive effects on CD4 count, HIV viral load, and several other measures of physical well-being in patients with advanced AIDS. Despite these improvements, the benefits of treatment on pain and symptom distress, and psychological well-being were less clear. In addition, treatment failure (mortality and intolerance) were not uncommon in this sample (40%). Further research is clearly necessary to better understand the benefits of HAART therapy in patients with advanced HIV infection.

Psychiatric dimensions of palliative care.

A critically important aspect of palliative care is the prompt recognition and effective treatment of psychiatric complications. Psychiatric syndromes such as depression, anxiety, confusion, suicidal ideation, and wish for hastened death or assisted-suicide occur in a significant percentage of patients with advanced illness. This article reviews their frequency, diagnosis, associated factors, and management to help expand the focus of palliative care beyond pain and physical symptom control.

Stress and burnout in oncology.

This article identifies the professional stressors experienced by nurses, house staff, and medical oncologists and examines the effect of stress and personality attributes on burnout scores. A survey was conducted of 261 house staff, nurses, and medical oncologists in a cancer research hospital, and oncologists in outside clinical practices. It measured burnout, psychological distress, and physical symptoms. Each participant completed a questionnaire that quantified life stressors, personality attributes, burnout, psychological distress, physical symptoms, coping strategies, and social support. The results showed that house staff experienced the greatest burnout. They also reported greater emotional exhaustion, a feeling of emotional distance from patients, and a poorer sense of personal accomplishment. Negative work events contributed significantly to level of burnout; however, having a "hardy" personality helped to alleviate burnout. Nurses reported more physical symptoms than house staff and oncologists. However, they were less emotionally distant from patients. Women reported a lower sense of accomplishment and greater distress. The four most frequent methods of relaxing were talking to friends, using humor, drinking coffee or eating, and watching television. One unexpected finding was that the greater the perception of oneself as religious, the lower the level of burnout. Thus, while the rewards of working in oncology are usually sufficient to keep nurses and doctors in the field, they also experience burnout symptoms that vary by gender and personal attributes. House staff are most stressed and report the greatest and most severe symptoms of stress. Interventions are needed that address the specific problems of each group.

Impact of cancer-related fatigue on the lives of patients: new findings from the Fatigue Coalition.

PURPOSE: This survey was designed to confirm the prevalence and duration of fatigue in the cancer population and to assess its physical, mental, social, and economic impacts on the lives of patients and caregivers. Patients and Methods. A 25-minute telephone interview was completed with 379 cancer patients having a prior history of chemotherapy. Patients were recruited from a sample of 6, 125 households in the United States identified as having a member with cancer. The median patient age was 62 years, and 79% of respondents were women. Patients reporting fatigue at least a few times a month were asked a series of questions to better describe their fatigue and its impact on quality of life. RESULTS: Seventy-six percent of patients experienced fatigue at least a few days each month during their most recent chemotherapy; 30% experienced fatigue on a daily basis. Ninety-one percent of those who experienced fatigue reported that it prevented a "normal" life, and 88% indicated that fatigue caused an alteration in their daily routine. Fatigue made it more difficult to participate in social activities and perform typical cognitive tasks. Of the 177 patients who were employed, 75% changed their employment status as a result of fatigue. Furthermore, 65% of patients indicated that their fatigue resulted in their caregivers taking at least one day (mean, 4.5 days) off work in a typical month. Physicians were the health care professionals most commonly consulted (79%) to discuss fatigue. Bed rest/ relaxation was the most common treatment recommendation (37%); 40% of patients were not offered any recommendations. CONCLUSIONS: Cancer-related fatigue is common among cancer patients who have received chemotherapy and results in substantial adverse physical, psychosocial, and economic consequences for both patients and caregivers. Given the impact of fatigue, treatment options should be routinely considered in the care of patients with cancer.

The schedule of attitudes toward hastened death: Measuring desire for death in terminally ill cancer patients.

BACKGROUND: The authors examined the reliability and validity of the Schedule of Attitudes toward Hastened Death (SAHD), a self-report measure of desire for death previously validated in a population of individuals with the acquired immunodeficiency syndrome (AIDS), among terminally ill patients with cancer. METHODS: The authors interviewed 92 terminally ill cancer patients, all with a life expectancy of < 6 months, after admission to a palliative care hospital. Patients were administered the SAHD, a clinician-rated measure of desire for death (the Desire for Death Rating Scale [DDRS]), and several measures of physical and psychosocial well-being. RESULTS: The average number of SAHD items endorsed was 4. 76 (standard deviation, 4.3); 15 patients (16.3%) endorsed > or = 10 items, indicating a high desire for death. Internal consistency was strong (coefficient alpha = 0.88, median item-total correlation = 0. 49), as were indices of convergent validity. Total SAHD scores were correlated significantly (correlation coefficient [r] = 0.67) with the DDRS, and somewhat less so with measures of depression (r = 0. 49) and hopelessness (r = 0.55). Lower, but substantial, correlations were observed between the SAHD and measures of spiritual well-being (r = -0.42), quality of life (r = -0.36), physical symptoms (r = 0.38), and symptom distress (r = 0.38). No significant correlation was observed between SAHD scores and social support (r = -0.06) or pain intensity (r = 0.16); however, pain-related functional interference and overall physical functioning were correlated significantly with SAHD scores (r = 0.31 and r = -0.23, respectively). CONCLUSIONS: The SAHD appears to be a reliable and valid measure of desire for death among terminally ill cancer patients. Coupled with previous research in patients with AIDS, these results support the utility of the SAHD for research addressing interest in hastened death in patients with a life-threatening medical illness.

An alternative algorithm for dosing transdermal fentanyl for cancer-related pain.

Many cancer patients are undermedicated and inappropriately managed for pain, leading to a diminished quality of life. Patients with moderate to severe pain often require opioid analgesics. Recently published guidelines emphasize individualization of opioid treatment to provide the drug and route of administration that meet the needs of the particular patient. Intolerable side effects, ineffective pain relief, or a change in the patient's clinical status can dictate the need for a new pain management regimen. Physicians must be able to readily quantify relative analgesic potency when converting from one opioid to another or from one route of administration to another. Transdermal fentanyl (Duragesic) is an opioid agonist that has been shown to be safe and effective for the treatment of cancer pain. However, clinicians should realize that the manufacturer's recommendations for equianalgesic dosing of transdermal fentanyl may result in initial doses that are too low in some patients, and in a titration period that is too long. Under these circumstances, the patient is likely to experience unrelieved pain. An alternative dosing algorithm that considers both a review of the literature and our combined clinical experience with transdermal fentanyl should help clinicians individualize the treatment of pain.

A pilot survey of aberrant drug-taking attitudes and behaviors in samples of cancer and AIDS patients.

The clinical assessment of drug-taking behaviors in medically ill patients with pain is complex and may be hindered by the lack of empirically derived information about such behaviors in particularly medically ill populations. To investigate issues surrounding the assessment of these behaviors, we piloted a questionnaire based on the observations of specialists in pain management and substance abuse. This preliminary questionnaire evaluated medication use, present and past drug abuse, patients' beliefs about the risk of addiction in the context of pain treatment, and aberrant drug-taking attitudes and behaviors. This instrument was piloted in a mixed group of cancer patients (N = 52) and a group of women with HIV/AIDS (N = 111). Reports of past drug use and abuse were more frequent than present reports in both groups. Current aberrant drug-related behaviors were seldom reported, but attitude items revealed that patients would consider engaging in aberrant behaviors, or would possibly excuse them in others, if pain or symptom management were inadequate. Aberrant behaviors and attitudes were endorsed more frequently by the women with HIV/AIDS than by the cancer patients. Patients greatly overestimated the risk of addiction in pain treatment. We discuss the significance of these findings and the need for cautious interpretation given the limitations of the methodology. This early experience suggests that both cancer and HIV/AIDS patients appear to respond in a forthcoming fashion to drug-taking behavior questions and describe attitudes and behaviors that may be highly relevant to the diagnosis and understanding management of substance use among patients with medical illness.

Delirium in the terminally ill.

Delirium is highly prevalent in terminally ill patients, especially in the last weeks of life, when some cognitive impairment develops in as many as 85% of patients. Delirium is associated with increased morbidity in terminally ill patients and can interfere with pain and symptom control. The cause of delirium is usually multifactorial and often cannot be found or reversed in dying patients. Nonpharmacologic and pharmacologic interventions are effective in controlling the symptoms of delirium in terminally ill patients. Haloperidol and other newer neuroleptics are safe and effective in eliminating delirium for some patients. In approximately one third of patients, delirium can be managed successfully only by providing sedation.

Cancer and the experience of meaning: a group psychotherapy program for people with cancer.

Cancer illness affects people in many ways, physical, financial, and existential. In this paper, we describe a proposed group intervention for individuals with advanced disease who want help finding a sense of meaning at this critical juncture in their lives. This intervention has a brief, semi-structured format, and is informed by the work of Viktor Frankl, empirical findings in the area of meaning and trauma, and the empirical findings of other group interventions for cancer patients. Individual sessions focus on different aspects of meaning, including responsibility to others, creativity, transcendence, and ascertaining one's values and priorities. Having goals on which to focus and feeling like part of a larger whole are critically important to the ability to find meaning and cope with terminal illness. Such goals may be generated by a number of sources, including connectedness with others, or a sense of the temporal continuity of one's own life despite the disruption posed by severe illness. Didactic discussions and experiential exercises help to facilitate exploration of these various elements in group members' lives. The finite structure of the intervention may also highlight these issues, as people who are faced with similar issues work together in a limited time frame in order to accomplish the goals they set out for themselves.

HIV/AIDS-related pain as a chronic pain condition: implications of a biopsychosocial model for comprehensive assessment and effective management.

This paper reviews the current literature focusing on pain in HIV/AIDS, including prevalence, pathophysiology, substance abuse, treatment issues, and psychosocial contributions. In light of the high prevalence of pain among individuals with HIV/AIDS, attention is paid to the negative psychosocial impacts of pain in this population and to psychosocial barriers to optimal HIV/AIDS-related pain treatment. The paper conceptualizes HIV/AIDS pain as chronic pain. Subsequently, a biopsychosocial model of chronic pain assessment and treatment is applied. A multidimensional framework is presented for appropriate assessment and treatment of HIV/AIDS patients with pain, and specific recommendations and guidelines are offered for assessment and multimodal treatment of HIV/AIDS-related pain informed by the model.

Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer.

CONTEXT: Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide. OBJECTIVES: To assess the prevalence of desire for hastened death among terminally ill cancer patients and to identify factors corresponding to desire for hastened death. Design Prospective survey conducted in a 200-bed palliative care hospital in New York, NY. PATIENTS: Ninety-two terminally ill cancer patients (60% female; 70% white; mean age, 65.9 years) admitted between June 1998 and January 1999 for end-of-life care who passed a cognitive screening test and provided sufficient data to permit analysis. MAIN OUTCOME MEASURE: Scores on the Schedule of Attitudes Toward Hastened Death (SAHD), a self-report measure assessing desire for hastened death among individuals with life-threatening medical illness. RESULTS: Sixteen patients (17%) were classified as having a high desire for hastened death based on the SAHD and 15 (16%) of 89 patients met criteria for a current major depressive episode. Desire for hastened death was significantly associated with a clinical diagnosis of depression (P=.001) as well as with measures of depressive symptom severity (P<.001) and hopelessness (P<.001). In multivariate analyses, depression (P=.003) and hopelessness (P<.001) provided independent and unique contributions to the prediction of desire for hastened death, while social support (P=.05) and physical functioning (P=.02) added significant but smaller contributions. CONCLUSIONS: Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.