Personal responsibility, regret, and medical stigma among individuals living with lung cancer.

Understanding the degree to which adults with lung cancer perceive personal responsibility for their disease, personal regret for actions that may have contributed to lung cancer, and potential stigmatization from others is important, because these perceptions and experiences may be linked with treatment nonadherence, feelings of isolation, avoidance of healthcare providers, and poor quality of life. The purpose of this study was to evaluate rates and intensity of these types of experiences and to characterize the extent to which they are linked with smoking status and psychological adjustment in those living with lung cancer. Adults with lung cancer (N = 213) were recruited from two major cancer centers to complete a mail survey. Perceived responsibility was frequent in those who had ever smoked (74-80%), whereas regret and feelings of stigmatization were less frequent. When present, however, personal regret and stigmatization were associated with adverse psychological outcomes, particularly for never smokers. These results are consistent with the theory of stereotype threat and have clinical implications for management of people with lung cancer.

[EVALUATION OF THE QUALITY OF LIFE IN PATIENTS FOR LOCALLY COMMON MALIGNANT NEOPLASMS OF THE ORAL MUCOSA AFTER COMPLEX TREATMENT].

Based on the analysis of the quality of life (QOL) evaluation of 74 patients who were treated for locally common malignant tumors of the oral mucosa, presented the experience of their orthopedic rehabilitation by restoring the aesthetic functional characteristics of the maxillofacial region using removable structures after reconstruction of mandible defects.

[Risc factors for assisted suicide for cancer patients - mental burden of bereaved]. / Risikofaktoren für (assistierten) Suizid bei Karzinompatienten - psychische Belastungen bei den Hinterbliebenen.

Chronic and progressive disease represents a significant risk factor for suicidal behavior. Cancer patients have almost twice the rate of suicides compared to the general population. Based on a case report, the suicidal risk factors for cancer patients are presented. It is further investigated to what extent professional support by a mobile palliative care team can affect the wish for assisted suicide or the suicidal behavior generally among patients receiving palliative care. In addition, the mental impact on individuals, who were witnesses of assisted suicide of relatives or close friends are presented. The occurrence of posttraumatic stress disorder (PTSD), depressions, anxiety disorders and complicated grief (CG) in close family members is shown. However, further research will be necessary to develop adequate support for patients (and their relatives), who plan an assisted suicide.

[Palliative patients and their families - an inseparable complex system]. / Der Palliativpatient und seine Familie - ein untrennbares komplexes System.

On the basis of a case report it can be demonstrated, how important the acquirement about the social net of the patient for a palliative team is. The involvement of the family into dealing with death and ending of life is as important as the co-caring of the family itself. Only by recognizing the structures inside of a family, an optimal care can take place.

Dyspnea experience and management strategies in patients with lung cancer.

OBJECTIVE: The aim of this paper was to describe lung cancer patients' experience of dyspnea and their strategies for managing the dyspnea. METHODS: Semi-structured interviews with two main questions about dyspnea experiences and management were conducted with 20 patients with lung cancer, not amenable to curative treatment, who had completed life prolonging treatments. Data analysis was made with a descriptive, qualitative content analysis. RESULTS: The two questions resulted in two domains with 7 categories and subcategories. The experience of dyspnea included four categories: 'Triggering factors' included circumstances contributing to dyspnea, which comprised physical, psychosocial and environmental triggers. Bodily manifestations were considered to be the core of the experience. 'Immediate reactions' concerned physical and psychological impact. The long-term reactions included limitations, increased dependence and existential impact concerning hope, hopelessness and thoughts of death. The experience of managing dyspnea included three categories: 'Bodily strategies', 'psychological strategies' and 'medical strategies'. CONCLUSION: Dyspnea experience is a complex experience which influences the life of the patients both with immediate reactions and long-term reactions concerning physical, emotional and existential issues in life and patients address this experience with managing strategies in order to take control of their situation, although they do not seem to be able to meet the existential distress they experience.

Case report: clozapine given in the context of chemotherapy for lung cancer.

BACKGROUND: Despite the frequent use of the antipsychotic medication, clozapine, in chronic treatments of psychiatric patients, there is limited clinical evidence available to guide clinicians in the problematic situation of a chemotherapy-induced blood dyscrasia. OBJECTIVE: To perform a literature review and add a case report to the available clinical evidence. METHOD: We gathered evidence through literature searches on Medline and with the assistance of a medical information specialist from Novartis who searched their internal database. We also report the case of a patient maintained on clozapine treatment despite full-dose chemotherapy (cisplatin and etoposide) for an extensive lung cancer. RESULT: The searches returned seven clinically relevant references. These references do not establish a synergistic effect of clozapine and chemotherapy on blood counts. However, it has been shown that clozapine exposure activates common apoptotic pathways shared with anticancer drugs. CONCLUSION: Although the meagre clinical evidence precludes drawing any general conclusion as to the safety of maintaining clozapine administration during chemotherapy, it does not point to an obvious worsening of the haematological outcomes.

Do patients with schizophrenia receive state-of-the-art lung cancer therapy? A brief report.

OBJECTIVE: Patients with schizophrenia sometimes receive substandard medical care. This study explored such disparities among lung cancer patients with underlying schizophrenia. METHODS: This retrospective study focused on patients with pre-existing schizophrenia (or in some instances schizoaffective disorder) and a lung cancer diagnosis made between 1980 and 2004. 'Disparity' was defined as a patient's having been prescribed less aggressive therapy for a potentially curable cancer based on state-of-the-art treatment standards for the time and for the cancer stage. Qualitative methods were used to assess healthcare providers' decision-making. RESULTS: 29 patients were included. The median age was 59 years; 38% were men. Twenty-three had non-small cell lung cancer and 6 small cell lung cancer; 17 had potentially curable cancers. Five of 17 had a 'disparity' in cancer care: (1) no cancer therapy was prescribed because of chronic obstructive pulmonary disease; (2) no cancer therapy was prescribed because of infection; (3) no chemotherapy was prescribed because the patient declined it; radiation was provided; (4) no chemotherapy was prescribed because of the patient's schizophrenia symptoms; radiation was administered; and (5) no surgery was performed because of disorientation from a lobotomy; radiation was prescribed. Comments from healthcare providers suggest reflection and ethical adjudication in decision-making. CONCLUSION: Schizophrenia was never the sole reason for no cancer treatment in patients with potentially curable lung cancer. This study provides the impetus for others to begin to assess the effect of schizophrenia on lung cancer management in other healthcare settings.

Sleep disturbances and impaired daytime functioning in outpatients with newly diagnosed lung cancer.

BACKGROUND: Clinical experience suggests that lung cancer (LC) is associated with sleep disturbances that may contribute to impaired daytime functioning and quality of life. Using questionnaires and home actigraphic recordings, we tried to determine whether sleep quality and daytime alertness are impaired in patients with newly diagnosed LC. PATIENTS AND METHODS: Twenty-nine outpatients with newly diagnosed LC and an Eastern Cooperative Oncology Group performance status

Cigarette smokers views on their habit and the causes of their illness following lung cancer diagnosis: a clinical-qualitative study.

CONTEXT AND OBJECTIVE: Lung cancer is the commonest malignant tumor and is increasing in incidence by 2% a year. In 90% of diagnosed cases, it is associated with tobacco product consumption. It is the greatest cause of mortality among cancer types in Brazil. Knowledge of patients psychological representations is needed for evaluating treatments and educating patients. The aim here was to interpret how smokers with lung cancer interpret the possible causes of their illness and to understand their perceptions regarding cigarette use. DESIGN AND SETTING: Clinical-qualitative study (exploratory, non-experimental) at the Pulmonary Disease Service, General Hospital, Universidade Estadual de Campinas. METHODS: An intentional small sample of cancer inpatients was recruited. The group was closed with 11 subjects, following attainment of data saturation from interviews. These interviews were semi-directed, with in-depth open-ended questions on interviewees observations, applied in a confidential setting using a tape recorder. Interviewees responses were categorized using qualitative content analysis and the results were assessed using interdisciplinary theoretical concepts, particularly from medical psychology. RESULTS: Six males and five females aged between 46 and 68 years who presented diverse clinical conditions were interviewed. CONCLUSIONS: A broader approach towards the psychological comprehension of such patients is needed, considering that cigarette consumption involves conscious and unconscious motivations, sociocultural and educational factors, the glamour of tobacco advertising, and problems with psychophysical dependence. Such an approach would avoid the perception among patients that the healthcare team are "inquisitors". This would lead to better adherence to treatment and better quality of life.

Interpreting the significance of changes in health-related quality-of-life scores.

PURPOSE: To determine the significance to patients of changes in health-related quality-of-life (HLQ) scores assessed by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30). PATIENTS AND METHODS: A subjective significance questionnaire (SSQ), which asks patients about perceived changes in physical, emotional, and social functioning and in global quality of life (global QL) and the QLQ-C30 were completed by patients who received chemotherapy for either breast cancer or small-cell lung cancer (SCLC). In the SSQ, patients rated their perception of change since the last time they completed the QLQ-C30 using a 7-category scale that ranged from "much worse" through "no change" to "much better." For each category of change in the SSQ, the corresponding differences were calculated in QLQ-C30 mean scores and effect sizes were determined. RESULTS: For patients who indicated "no change" in the SSQ, the mean change in scores in the corresponding QLQ-C30 domains was not significantly different from 0. For patients who indicated "a little" change either for better or for worse, the mean change in scores was about 5 to 10; for "moderate" change, about 10 to 20; and for "very much" change, greater than 20. Effect sizes increased in concordance with increasing changes in SSQ ratings and QLQ-C30 scores. CONCLUSION: The significance of changes in QLQ-C30 scores can be interpreted in terms of small, moderate, or large changes in quality of life as reported by patients in the SSQ. The magnitude of these changes also can be used to calculate the sample sizes required to detect a specified change in clinical trials.

Psychologic and neuropsychologic functioning of patients with limited small-cell lung cancer treated with chemotherapy and radiation therapy with or without warfarin: a study by the Cancer and Leukemia Group B.

PURPOSE: The current study assessed the psychologic and neuropsychologic functioning of patients with small-cell lung cancer who were randomized in a large clinical trial to receive intensive doxorubicin, cyclophosphamide, etoposide (ACE)/cisplatin, cyclophosphamide, etoposide (PCE) chemotherapy and radiation therapy (RT) to the primary tumor and prophylactic whole-brain irradiation with (regimen I) or without (regimen II) warfarin. PATIENTS AND METHODS: Patients' emotional states and cognitive functioning were assessed using the Profile of Mood States (POMS) and Trail Making B Test (Trails B), respectively. Two hundred ninety-five patients completed the POMS and Trails B at pretreatment, 224 patients after the completion of the ACE course of chemotherapy (week 9), and 177 patients after the completion of the PCE chemotherapy and RT (week 17). RESULTS: No differences on the POMS or Trails B measures were found between the two treatment arms as predicted, given that the only difference between the two treatment arms was the presence or absence of warfarin. Analysis of the POMS revealed that, overall, mean scores remained stable over the course of treatment; however, women showed a trend toward higher mean scores, which indicated a higher level of distress, compared with men at the pretreatment assessment. Examination of cognitive functioning, measured by the Trails B, revealed improved performance from baseline to post-ACE chemotherapy, which is consistent with a practice effect, but a significant worsening of Trails B scores post-RT compared with the pre-RT assessments, which is consistent with impaired cognitive functioning because of treatment (P < .0001). CONCLUSION: Emotional state, measured by the POMS, did not differ between the groups or change significantly over time in this study of small-cell lung cancer patients treated with a combination of chemotherapy and RT plus or minus warfarin. However, the pattern of relatively stable POMS scores and poorer Trails B performance post-RT suggested that this combination of chemotherapy and RT had a negative impact on cognitive functioning.

Depression in patients with lung cancer: prevalence and risk factors derived from quality-of-life data.

PURPOSE: To evaluate self-reported depression rates in patients with inoperable lung cancer and to explore demographic, clinical, and quality-of-life (QOL) factors associated with depression and thus identify patients at risk. PATIENTS AND METHODS: Nine hundred eighty-seven patients from three palliative treatment trials conducted by the Medical Research Council Lung Cancer Working Party formed the study sample. 526 patients (53%) had poor prognosis small-cell lung cancer (SCLC) and 461 patients (47%) had good prognosis non-small-cell lung cancer (NSCLC). Hospital Anxiety and Depression Scale data and QOL items from the Rotterdam Symptom Checklist were analyzed, together with relevant demographic and clinical factors. RESULTS: Depression was self-rated in 322 patients (33%) before treatment and persisted in more than 50% of patients. SCLC patients had a three-fold greater prevalence of case depression than those with NSCLC (25% v 9%; P <.0001). An increased rate for women was found for good performance status (PS) patients (PS of 0 or 1) but the sex difference reduced for poor PS patients (PS of 3 or 4) because of increased depression rates for men (chi(2) for trend, P <.0001). Multivariate analysis showed that functional impairment was the most important risk factor; depression increased by 41% for each increment on the impairment scale. Pretreatment physical symptom burden, fatigue, and clinician-rated PS were also independent predictors, but cell type was not. CONCLUSION: Depression is common and persistent in lung cancer patients, especially those with more severe symptoms or functional limitations. Psychologic screening and appropriate intervention is an essential part of palliative care.

Neurologic, computed cranial tomographic, and magnetic resonance imaging abnormalities in patients with small-cell lung cancer: further follow-up of 6- to 13-year survivors.

To determine the subsequent evolution of neurologic, neuropsychologic, and intracranial anatomic findings in long-term survivors of small-cell cancer, we repeated an evaluation done 4 years previously in patients 6 to 13 years after treatment. Fifteen patients were reevaluated with a history and physical examination, mental status examination, neuropsychologic testing, computed cranial tomographic (CCT) scans, and magnetic resonance imaging (MRI). All but one was ambulatory and none were institutionalized. Thirteen of 15 had neurologic complaints, 10 of 15 had an abnormal neurologic examination, seven of 14 had an abnormal mental status examination, 12 of 14 had abnormal neuropsychologic testing, 12 of 15 had abnormal CCT scans, and seven of 15 had white-matter abnormalities on MRI scans. No dramatic decline in performance status, functional status, neurologic symptoms, or neurologic examination occurred in these patients with 4 years of additional follow-up. More patients showed a decline in mental status examinations and neuropsychologic testing than demonstrated improvement. Anatomic studies showed no dramatic changes in the CCT scans and MRI confirmed these findings. From these data we conclude that there is a slow decline in neuropsychologic function in some of the patients surviving more than 6 years from a diagnosis of small-cell lung cancer. The anatomic abnormalities documented by CCT scans and MRI are more frequent in patients with abnormal neuropsychologic function.

Psychosocial aspects of lung cancer.

BACKGROUND: Lung cancer is one of the commonest cancers in the industrialised world, and persons with this grave disease must deal not only with the physical effects but also with the psychosocial aspects. METHODS: This review is based on an examination of intervention, prospective and case-control studies with more than 50 participants published between 1966 and 2003. RESULTS: The studies show that on average one out of four persons with lung cancer experience periods of depression or other psychosocial problems during their illness. Persons who are not offered treatment for their cancer and persons with small-cell lung cancer have a higher risk compared to other groups of lung cancer patients. The degree of depression can be reduced by psychosocial interventions. CONCLUSIONS: We suggest that psychosocial screening of persons with lung cancer could prevent depression and might result in improved quality of care.

Paraneoplastic limbic encephalitis: neuropsychiatric presentation.

Limbic encephalitis as a distinct clinicopathological entity is becoming increasingly familiar to neurologists. However, despite its classical clinical presentation of mental status changes and behavioral abnormalities, the disorder is not well known in the psychiatric literature and premortem diagnosis is rare. We recently participated in the care of a patient who spent two months on a psychiatric service and in whom a medical disorder was consistently suspected but not confirmed until autopsy revealed paraneoplastic limbic encephalitis and two primary systemic malignancies. A detailed neuropsychiatric description of this clinical entity is provided from presentation to autopsy with review of the literature.

Psychological response of patients receiving two drug regimens for lung carcinoma.

Seventy-seven patients with small cell lung carcinoma were assigned randomly to two chemotherapy regimens to assess their psychological response to each regimen. One produced less depression and fatigue than the other, despite the absence of differences in tumor response.

Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS).

This paper presents the continued development and multi-institutional testing of an instrument focusing on measuring the physical and functional dimensions of quality of life. It emphasises evaluation of symptoms associated with lung cancer and their effect on activity status. The Lung Cancer Symptom Scale (LCSS) is a disease- and site-specific instrument which has both a patient and an observer (health care professional) form. The patient scale required 8 min to administer and the observer scale 2 min. The readability index was second-grade level for the patient scale and ninth-grade level for the observer scale. Content validity revealed a mean of 96% agreement for all major symptoms among 52 experts surveyed (confidence interval = 86-99%, P = 0.05). 69 patients with non-small cell and 52 patients with small cell lung cancer confirmed that the symptoms matched their experiences. Interrater reliability showed consistency for all items but one among 21 raters at eight institutions; that one item was consistent for 20 of the 21 raters. Similar results were found on a 9-month interval replication. Using the Kappa statistic to estimate extent of agreement for repeated interrater reliability, almost perfect agreement was obtained (mean coefficients, 0.95-0.98). Using the same rule of agreement as for Kappa (+/- one category) intrarater agreement was 95-100% for all 21 raters. Past test re-test reliability indicated high patient reproducibility for 52 patients (r > 0.75, P < 0.01 for all items). We conclude that (1) the LCSS demonstrates good feasibility, reliability, and content validity, (2) high interrater reliability indicates utility in multicentre trials, and (3) continued testing for internal consistency, construct validity and criterion-related validity is warranted.

Neurological and cognitive impairment in long-term survivors of small cell lung cancer.

Despite its effectiveness in reducing the rate of brain metastases, the role of prophylactic cranial irradiation (PCI) in the management of small cell lung cancer (SCLC) remains controversial because of concern about radiation-induced neurological morbidity. In order to evaluate morbidity and its impact on quality of life 64 patients surviving > or = 2 years in remission were recalled for assessment. 52 had received PCI. Most of the patients were well: 95% had performance status < or = 1 and nine out of 37 neurological examinations were abnormal. On neuropsychometric testing, only 19% of patients performed at the level expected for their age and intellectual ability on all four tests used. Fifty-four per cent of patients were impaired on two or more of the tests, suggesting a significant degree of measurable cognitive dysfunction. The number of patients who had not received PCI was insufficient for comparative analysis with the number who had, but among those treated with PCI, patients receiving 8 Gy in 1 fraction appeared less impaired than those receiving higher radiation doses in multiple fractions. The study showed that neuropsychometric testing is acceptable to patients, can be administered by non-psychologists in the clinic and is sensitive to otherwise undetected deficits of cognitive function in this patient population. Prospective evaluation of PCI should include neuropsychometric testing.

The role of prophylactic brain irradiation in limited stage small cell lung cancer: clinical, neuropsychologic, and CT sequelae.

Ninety-four patients with limited stage small cell lung cancer treated between 1981 and 1985 with a regimen including prophylactic brain irradiation (PBI) after combination chemotherapy were assessed for compliance with PBI, brain relapse, and neurologic morbidity. Seventy-seven percent of patients had PBI and of these, 22% developed brain metastases after a median time of 11 months post treatment. The brain was the apparent unique initial site of relapse in 10% of PBI cases but more commonly brain relapse was preceded or accompanied by failure at other sites, especially the chest. Brain metastases were the greatest cause of morbidity in 50% of PBI failures. Twelve of 14 PBI patients alive 2 years after treatment had oncologic, neurologic, and neuropsychological evaluation, and brain CT. All long-term survivors were capable of self care and none fulfilled diagnostic criteria for dementia, with three borderline cases. One third had pretreatment neurologic dysfunction and two thirds post treatment neurologic symptoms, most commonly recent memory loss. Fifty percent had subtle motor findings. Intellectual functioning was at the 38th percentile with most patients having an unskilled occupational history. Neuropsychologic impairment ratings were borderline in three cases and definitely impaired in seven cases. CT scans showed brain atrophy in all cases with mild progression in those having a pre-treatment baseline. Periventricular and subcortical low density lesions identical to the CT appearance of subcortical arteriosclerotic encephalopathy were seen in 82% of posttreatment CT studies, and lacunar infarcts in 54%. Neuropsychologic impairment scores and the extent of CT periventricular low density lesions were strongly associated (rank correlation 0.7, p less than .05). Overall, PBI after intensive combination chemotherapy did not induce gross dementia or neurologic dysfunction but its risk/benefit ratio is not overwhelmingly favorable, with failure to prevent brain relapse in 1/5 patients and subtle but detectable motor findings and neuropsychologic impairment in the majority.

Social consequences of brain or liver relapse in small cell carcinoma of the bronchus.

The time spent in hospital when cerebral metastases occur as the first site of relapse in patients with small cell carcinoma of the lung (SCCL) has been analysed and compared to the consequences of relapse in the liver. In the course of a clinical trial with 370 patients, 50 patients relapsed initially in the brain and 20 in the liver. The 2 groups were comparable with respect to performance status at diagnosis and the amount of home support available. Patients who relapsed in the brain suffered a greater deterioration in performance status, and spent a greater proportion of their remaining life in hospital than did patients whose initial relapse was in the liver. This difference was most marked in patients who died soon after relapse. Radiotherapy (20 Gy in 5 fractions over one week or 30 Gy in 10 fractions over 2 weeks) and dexamethasone were not very effective treatments for brain relapse though subjective responses were common. The substantial morbidity and lengthy hospitalisation resulting from brain relapse compared with relapse at another site is a important factor to be considered in assessing whether prophylactic cranial irradiation should routinely be offered to patients with SCCL.