Cancer and folie à deux: case report, treatment, and implications.

PURPOSE: This report describes the uncommon psychopathological state best known as folie à deux, or shared psychotic disorder, in a unique case in which the grandiose, religious delusions of a woman with uterine cancer are shared with her husband. OVERVIEW: More than 50% of patients with cancer meet the criteria for diagnosis of major psychiatric disorders. Certainly, these disorders may occur as a result of the stress of the cancer diagnosis and treatment, but also because of a predisposition to psychiatric illness or a pre-existing psychiatric illness. In the medical setting, the phenomenon of folie à deux poses significant problems not only for the patient, but also for the involved family member, psychiatric consultant, and healthcare team. CLINICAL IMPLICATIONS: In this case, the patient's delusional system had a grave impact on her ability to make rational healthcare decisions, for which she was deemed incompetent. The first choice for her healthcare surrogate, her husband, was so affected by his sharing of her psychotic condition that he could not fulfill this role. In assessing a suspected case of folie à deux, awareness of several issues--the point at which religious over-ideation becomes delusional, the spectrum of competency, informed consent, and treatment refusal--is important.

How problematic are various aspects of quality of life in patients with cancer at the end of life?

PURPOSE/OBJECTIVES: To identify aspects of quality of life (QOL) in patients receiving end-of-life care that are most and least problematic for patients. DESIGN: Descriptive using secondary analysis of data from an earlier QOL study. SETTING: A large not-for-profit hospice that primarily provides home care in southwest Florida. SAMPLE: 231 homecare hospice patients with cancer. METHODS: Item analysis of items on the Hospice Quality-of-Life Index. MAIN RESEARCH VARIABLES: Psychophysiologic, functional, and social/spiritual well-being. FINDINGS: Patients had the most problems in the area of functional well-being and the least problems with social/spiritual well-being. Most common physical problems included constipation and dyspnea. CONCLUSIONS: Patients with end-stage cancer are able to maintain their relationships with God and with family and friends even in the face of marked functional difficulties and troublesome physical symptoms. IMPLICATIONS FOR NURSING PRACTICE: A continued focus on the patient and family by the interdisciplinary healthcare team is warranted.

The family caregiver of the older cancer patient.

Cancer care is becoming increasingly complex. The health care practices of the present day make it imperative that the family provide assistance in the day-to-day management of a patient's symptoms and in the implementation of home care. This increased responsibility for the family caregiver can come at great cost to the overall functioning of the family, because of role changes, changes in the family structure, and financial stressors, among others. Caregivers can experience adverse effects on their mental and physical health that can remain long after the caregiving role has ended. Although much of the research has focused on the negative elements of caregiving, it must be remembered that there are positive aspects to caregiving, which are now receiving attention in the research literature. Although other factors affect caregiving, the model of factors important in the caregiving experience presented in this article may provide the impetus for studying the relationships among these different factors. Results of these studies will allow the development of specific interventions to help caregivers be more effective in their caregiving role and, at the same time, address the overall impact of caregiving on the family.

The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer.

Family caregivers have become increasingly responsible for providing home care for cancer patients. Research has documented the distress of family caregivers; however, little has been done to evaluate the broader impact of caregiving on quality of life (QoL). The objectives of this study were to evaluate the reliability and validity of the Caregiver Quality of Life Index-Cancer (CQOLC), a new self-report instrument. Two hundred and sixty-three family caregivers of patients with lung, breast or prostate neoplasms participated. Test-retest reliability was 0.95 and internal consistency was 0.91. As expected, there were moderate correlations with overall mental health (r = 0.64), emotional distress (r = -0.50 to -0.52), burden (r = -0.65) and patient's performance status (r = -0.47) and low correlations with overall physical health (r = 0.13), social support (r = 0.22) and social desirability (r = 0.08). These results show that increased overall mental health is associated with better QoL, while more emotional distress and worsening patient performance status are associated with poorer QoL. Thus, the CQOLC appears to possess adequate validity, test-retest reliability and internal consistency. Future directions include further evaluation of sensitivity to change and factor analysis to determine the principal health-related QoL domains evaluated by the CQOLC.

The Caregiver Quality of Life Index-Cancer (CQOLC) Scale: revalidation in a home hospice setting.

Hospices provide palliative care to persons who are dying and supportive care to their family caregivers. As death approaches, these family caregivers become increasingly responsible for providing the majority of daily care. Although research has documented their distress, little work has evaluated the broader impact of caregiving on quality of life (QOL). This study reevaluates the internal consistency and validity of the Caregiver Quality of Life Index-Cancer (CQOLC). 239 family caregivers of hospice patients with a variety of cancer diagnoses participated. Internal consistency for the instrument was 0.87. There were moderate correlations with overall mental health (r = 0.68) and low correlations with overall physical health (r = 0.01). Low correlations were observed with patient's performance status (r = 0.09). The CQOLC appears to possess adequate validity and internal consistency in this revalidation sample.

Family caregiver quality of life: differences between curative and palliative cancer treatment settings.

To compare the impact of cancer caregiving in curative and palliative settings on family caregiver quality of life (QOL), 267 family caregivers of cancer patients receiving curative treatment were compared to 134 family caregivers of cancer patients receiving palliative treatment through hospice. Both groups completed a demographic profile in addition to two self-report QOL questionnaires. Patient performance status and disease site were also recorded. Family caregivers of patients receiving palliative care had significantly lower QOL scores and lower scores on physical health. Hierarchical multiple regressions showed that after accounting for patient performance status, treatment status accounted for no additional significant variability in QOL scores. After accounting for caregiver level of education, treatment status accounted for no additional significant variability in physical health. These results suggest that the lower QOL scores of caregivers in the palliative setting are a reflection of the patients' poorer performance status. The lower physical health scores of caregivers in the palliative setting appear to be a reflection of their lower educational level. Additional research is needed to evaluate the influence of specific demands of caregiving and emotional distress of the caregiver on caregiver QOL.

Psychosocial and neuropsychiatric aspects of patients with primary brain tumors.

Primary brain tumors are increasing in incidence in the United States and are devastating to patients and families. Because brain tumors and their treatment primarily affect the brain, psychiatric and psychosocial impact is rather unique. As opposed to systemic effects of other tumors and treatment, brain tumors have a direct effect on brain functioning and therefore affect cognition, mood, and personality. In fact, patients undergo dramatic changes in mood and cognition, showing specific impairments in functioning. These impairments get translated into disabilities when a patient's daily functioning is impaired and may become a handicap when viewed in the context of quality of life (QOL). This article describes observed neuropsychiatric syndromes, including the apathy syndrome, and neurocognitive effects of brain tumors and their treatment. The neuropsychiatric and neurocognitive issues are discussed in the context of QOL and psychosocial and cognitive interventions available for this patient population.

Borderline personality disorder and bone marrow transplantation: ethical considerations and review.

Bone marrow transplantation (BMT) is rapidly becoming a part of conventional cancer treatment. However, it remains a 'last-ditch' treatment option for patients who have exhausted other treatment modalities. Patients experience a significant amount of emotional distress during all stages of the BMT process. Patients with personality disorders experience even more emotional distress than average and their behavior is often detrimental to effective patient-staff interactions. A case of a borderline patient is presented with a discussion of the ethical issues involved in the evaluation of these patients and the determination of their appropriateness for transplant.

Improving pain outcomes of hospice patients with cancer.

PURPOSE/OBJECTIVES: To evaluate the success of a multifaceted, hospicewide, nurse-focused pain-management intervention for improving patient pain outcomes. DESIGN: Comparative, descriptive. SETTING: A large, nonprofit hospice that primarily provides home care. SAMPLE: Two samples were included in the study. One sample (n = 47) was from a study completed in 1995 before the intervention, and one (n = 255) was from a study completed in 1997 after the intervention. All patients had been diagnosed with cancer and were alert and able to self-report. METHODS: Secondary analysis of data that were collected as part of two quality-of-life studies. The four-part intervention included intensive pain-management education for the nurses, development and implementation of pain-management policies and procedures, changes in pain assessment and management documentation, and development and use of quality assurance monitors by the nursing staff. MAIN RESEARCH VARIABLES: Pain at its worst, pain relief, and quality of life. FINDINGS: Adjusted mean pain-relief scores were significantly lower in 1995 (X = 5.8) than in 1997 (X = 8.4). In 1995, 43% of patients reported pain relief at a level of 5 or less (on a 0-10 scale). This number dropped to 10% by 1997. Adjusted mean pain-at-its-worst scores were significantly lower in 1997 (X = 6.1) than in 1995 (X = 6.7). Pain relief was found to be positively correlated (r = 0.41-0.51) with quality of life in both samples. CONCLUSIONS: The hospicewide pain-management intervention was effective. IMPLICATIONS FOR NURSING PRACTICE: Through careful study and multifaceted nurse-focused interventions, pain outcomes of hospice patients with cancer can be improved.

Quality of life in cancer patients: use of a revised Hospice Index.

PURPOSE: Improving or maintaining the quality of life for persons with cancer is a major goal of end-of-life care; however, to measure quality-of-life outcomes, a valid and reliable measure is needed. The purpose of this project was to report the psychometric properties of the revised Hospice Quality of Life Index (HQLI), including validity and reliability for hospice patients with cancer. DESCRIPTION: Data were collected from home care hospice patients with cancer (n = 255) and a group of apparently healthy adults in the community (n = 32). The revised HQLI is a 28-item self-report instrument that includes three subscales: Psychophysiological Well-being, Functional Well-being, and Social/Spiritual Well-being. RESULTS: Evidence for validity was provided in three ways. First, factor analysis confirmed the three subscales (Psychophysiological, Functional, and Social/Spiritual Well-being). Second, a weak significant correlation was found between the Easterm Cooperative Oncology Group Performance Status Rating scores and HQLI scores (r = .26; P = .00). Third, the HQLI was able to discriminate between hospice patients with cancer and apparently healthy adults (lambda = .34; P = .00). In addition, the mean scores of these two groups were significantly different (t = 6.64; P = .00). However, only a minimal difference in scores was found on the Social/Spiritual Well-being subscale between the cancer and healthy groups. Reliability for the revised HQLI was high for both the total scale (alpha = .88) and the subscales (alpha =.82-.85). CLINICAL IMPLICATIONS: Emphasis has been placed recently on understanding quality of life from the patient's perspective. The development of a valid and reliable tool can guide care givers in providing meaningful quality-of-life care. The HQLI provides patients the opportunity to express beliefs about quality-of-life issues and to maintain direction over a critical aspect of their care. Of note from this study, the significant difference between groups in functional well-being and minimal difference in social/spiritual well-being suggest that patients are able to appraise their functional abilities realistically and still maintain their social network and spiritual beliefs. Indeed, it may be that patients give family relationships and spiritual beliefs greater focus during a terminal illness.

Methylphenidate therapy improves cognition, mood, and function of brain tumor patients.

PURPOSE: Patients with malignant glioma develop progressive neurobehavioral deficits over the course of their illness. These are caused both by the effects of the disease and the effects of radiation and chemotherapy. We sought to determine whether methylphenidate treatment would improve these patients' neurobehavioral functioning despite their expected neurologic deterioration. PATIENTS AND METHODS: Thirty patients with primary brain tumors underwent neuropsychologic assessment before and during treatment with methylphenidate. Ability to function in activities of daily living and magnetic resonance imaging (MRI) findings were also documented. Patients were assessed on 10, 20, and 30 mg of methylphenidate twice daily. RESULTS: Significant improvements in cognitive function were observed on the 10-mg twice-daily dose. Functional improvements included improved gait, increased stamina and motivation to perform activities, and in one case, increased bladder control. Adverse effects were minimal and immediately resolved when treatment was discontinued. There was no increase in seizure frequency and the majority of patients on glucocorticoid therapy were able to decrease their dose. Gains in cognitive function and ability to perform activities were observed in the setting of progressive neurologic injury documented by MRI in half of the subjects. CONCLUSION: This study demonstrated improved patient function in the setting of a progressive neurologic illness. Methylphenidate should be more widely considered as adjuvant brain tumor therapy.

Neuropsychiatry and pituitary disease: an overview.

It has been recognized for some time that psychiatric symptoms, such as depression, anxiety, and behavioral alterations, may occur in patients who have pituitary disease. From other research focused on endocrine abnormalities seen in patients with psychiatric illness, it is understood that there is a significant interrelationship between the endocrine system and mental health. More recent research focusing on neural circuits in the brain and the impact of alterations in neurotransmission and neurohormonal modulation has shown that the prefrontal cortex can be affected by perturbations in functioning occurring in distant sites. Such is the situation with the hypothalamic-pituitary axis. Through its rich connections with other limbic structures, the hypothalamic-pituitary axis may affect the behavioral control exerted by the prefrontal cortex, causing mood and personality alterations. In the more severe cases, an apathy syndrome may develop which must be carefully differentiated from depression and other cognitive disorders. This report will review: (1) the neuroanatomical components that cause the behavioral changes observed in many patients with pituitary disease; (2) the current concept of apathy syndrome; (3) the differentiation of apathy syndrome from major depression; (4) the underlying neurobiology of apathy, and (5) potential treatments.

The impact of pituitary disease on the family caregiver and overall family functioning.

Chronic medical illness not only affects the patient but the entire family. The family system undergoes a tremendous change in focus during the acute illness, with members marshaling their resources to help the ill member. This inward focus is costly, producing profound stress. Often, family communication styles change to protect the family system and prior functioning. When the stress of caring for an ill member becomes chronic, as is seen in pituitary disease, the initially adaptive changes in family functioning may become problematic even in those families with previously healthy coping. Those families with previously less healthy functioning become even more dysfunctional. Each family identifies a caregiver for their ill member. This caregiver also experiences significant stress related to caregiving demands. Caregiver adaptation to the stress depends on how the stress is perceived, as well as the caregiver's coping patterns and availability of and satisfaction with social support. These elements comprise a stress process model of caregiving, which has been well-validated in dementia caregiving research. Although the majority of research has focused on dementia and cancer caregiving, identified issues have applicability to caregiving and family issues related to pituitary disease. This report will review: (1) the field of caregiving research, focusing on a stress process model; (2) those issues identified in prior caregiving research which have applicability in caregiving for patients with pituitary disease; (3) stresses on the family system; (4) assessment of family functioning, and (5) interventions for caregivers and areas for future research.

Cognitive functioning and quality of life in malignant glioma patients: a review of the literature.

The state of current research in the psychosocial and neurocognitive functioning of primary brain tumor patients, particularly those with gliomas, is reviewed. Specific instruments that have been used to evaluate psychosocial and neurocognitive functioning in this population are reviewed. Suggestions are made, based on the review, of the most appropriate psychosocial and neurocognitive instruments to implement in clinical research. Finally, research pertaining to psychosocial and neurocognitive interventions is reviewed and suggestions for further research are outlined. Few studies have adequately addressed the cognitive and psychosocial functioning of brain tumor patients and have focused primarily on relatively insensitive measures of outcome, including IQ scores, performance status, and neurologic examinations. The use of well-accepted, psychometrically sound quality of life instruments and more specific tests of cognitive functioning need to be included in clinical trials since most current treatments have a limited effect on the length of survival. Thus, the main rationale for selecting a given brain tumor therapy may ultimately be related to its profile of neurotoxic side-effects and impact on quality of life.

Relationship between quality of life and mood in long-term survivors of breast cancer treated with mastectomy.

This study sought to compare the mood and quality of life (QOL) of breast cancer survivors with those observed in low-risk breast cancer screening patients. A group of long-term stage I-III breast cancer survivors (n = 60) was compared with low-risk breast cancer screening patients (n = 93) on measures of depression, anxiety, and QOL. Patients without a previous psychiatric history were studied. Although the groups differed in age and education, correlations performed between age, education, and the outcome measures showed no association of age and education with the outcome measures. Breast cancer patients with stage III disease showed significantly poorer functioning, in all areas except family than did other breast cancer patients; however, when compared with the breast cancer screening group, they showed higher QOL scores in several domains. Higher mood scores were correlated with poorer scores in all QOL areas except family functioning in the breast cancer group. Only significantly elevated depression scores correlated with poorer QOL areas in the breast cancer screening group. The psychological measures were found to be more robust predictors of QOL than the demographic variables in both the cancer and the screening patients. These results suggest that long-term survivors of breast cancer continue to experience significant stress and emotional distress, as evidenced by increased depression and lower QOL functioning.

Developing a care giver quality-of-life instrument. Preliminary steps.

PURPOSE: Measures have been developed to evaluate care giver burden in care givers of geriatric patients and patients with Alzheimer's disease. The profile of the care giver of the patient with cancer is different, and no tool measuring quality of life for this group exists. This study represents the first phase in the development of such an instrument. DESCRIPTION OF STUDY: Semistructured interviews were conducted with 22 matched patients and family care givers and 10 healthcare professionals to elicit an item pool of care giver concerns. A subset of patients and care givers completed quality-of-life and mood measures from the care giver's perspective. RESULTS: Pearson product-moment correlations, analysis of variance, and Student's t-tests were performed to detect interactions of demographic variables with the mood and quality-of-life measures. Patients significantly underestimated the emotional distress experienced by their care givers. These results may be related to protective coping strategies used by the patients. CLINICAL IMPLICATIONS: This preliminary study underscores the need to address the emotional distress experienced by care givers. The items generated from this study will be reduced based on importance rankings by another group of care givers, and the remaining items will undergo validity and reliability testing.

A retrospective study of the psychiatric management and outcome of delirium in the cancer patient.

This report describes the evaluation and treatment of delirium in the cancer patient in a major comprehensive cancer center. Ninety consecutive cases of delirium seen by the inpatient psychiatry consultation/liaison service were analyzed in a retrospective fashion to evaluate demographic information, alcohol use, central nervous system disease, coexisting medical disease, and past psychiatric history. Delirium cases were divided into hyperalert, hypoalert, and mixed subtypes. For these three subtypes, medication profiles including dose of medication, duration of delirium, outcome, and the venue where the delirium began were also evaluated. The hyperalert subtype of delirium was the commonest type observed (71%) and had the shortest duration (P < 0.0001) and best outcome (P < 0.001). The patients with a hyperalert delirium subtype were treated with the least amount of haloperidol (P < 0.0001). Patients were delirious for longer when the delirium began in the intensive-care units (P < 0.04). In general, patients who received no haloperidol experienced delirium of longer duration (P < 0.02) than those receiving haloperidol. Since the data represent patients who were referred for psychiatric treatment, this may explain the increased number of hyperalert deliriums and, therefore, the generalizability of the results is limited. Delirium in the cancer patient is particularly problematic given the coexisting medical problems these patients experience. Because the outcome of delirium is better when the duration is shorter, it is important for clinicians to be sensitive to early symptoms so that treatment can be implemented faster, leading to less morbidity and mortality.

Psychosocial functioning and quality of life in patients with primary brain tumors.

Perceived quality of life (QOL) was evaluated in a group of 50 patients with primary brain tumors. Participants completed two QOL measures and a demographic profile. Age was found not to be an important factor in differentiating QOL in these patients. All areas of QOL were found to be affected adversely by one or more of five factors: being female, being divorced, having bilateral tumor involvement, having received chemotherapy, and having a poor performance status. Pearson product-moment correlations conducted on the subscale and total scores of the two QOL instruments revealed that the two scales measure different QOL aspects and overlap in only a few areas. This may be related to the different measurement paradigms that these two instruments represent. This study is one of the first to evaluate the multidimensional aspects of QOL in patients with primary brain tumors, an understudied group. A prospective study of QOL in this group, already underway at the authors' institution, is needed to evaluate comprehensively the effect of different treatments and interventions on the QOL functioning of primary brain tumor patients. Additionally, this study shows that the choice of QOL instruments is very important and needs to be driven by the research question.