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.

Health related quality of life, mood disorders and coping abilities in an unselected sample of patients with primary lung cancer.

BACKGROUND: Health related quality of life (HRQL), mood disorders and coping abilities have previously not been evaluated in an unselected sample of patients with primary lung cancer. DESIGN: A prospective study was performed on all patients diagnosed with primary lung cancer in Southern Norway from 2002 to 2005. HRQL was assessed according to EORTC, anxiety and depression according to HAD and coping ability according to SoC. RESULTS: Fatigue and sore mouth were more pronounced in SCLC than in NSCLC. Besides this, there were no difference in EORTC scores between histological groups. Non-responders to EORTC were older and more than twice as many had poor performance status compared to those answering. According to HAD, 17% of patients scored compatible with anxiety and 14% with depression, and one in four consistent with manifest anxiety and/or depression. Mean SoC score was 58.3. A HAD score compatible with anxiety or depression was associated with considerably worse EORTC function scores. A reduced coping ability according to SoC was only weakly associated with anxiety and depression. These scores are poorer than that recorded in selected EORTC databases from chemotherapy and radiotherapy studies. CONCLUSION: In this real-life survey on unselected patients with newly diagnosed lung cancer, mean HRQL scores were poorer than reference values from previous, treatment-based studies, documenting a higher burden of illness in lung cancer than previously documented. Anxiety and depression are common in lung cancer and are clearly related to reduced quality of life. From the clinical point of view, an increased focus on information when lung cancer is diagnosed, seems justified, as well as specific attention for patients with lung cancer with accompanying mood disorders.

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.

Neurocognitive function in patients with small cell lung cancer : effect of prophylactic cranial irradiation.

BACKGROUND: The use of prophylactic cranial irradiation (PCI) in patients with small cell lung cancer (SCLC) has been tempered by fears of detrimental effects on cognitive function. Neuropsychologic testing was prospectively conducted before and after PCI to evaluate its effects on cognitive function in patients with SCLC. METHODS: Ninety-six patients who completely or partially responded to initial therapy underwent formal neurocognitive testing before PCI. Three patients who had central nervous system metastasis were excluded. Of the remaining patients, 69 received PCI (mean dose, 25 grays [Gy] in 10 fractions). Repeat testing was performed on 37 patients (median follow-up, 23 months; range, 6-120 months). RESULTS: Baseline impairment was defined as > or =1.5 standard deviations below the normative mean. Before undergoing PCI, 47% of patients had evidence of impaired cognitive function. After PCI, univariate analysis revealed significant transient declines in executive function (pre-PCI mean, 15.6 +/- 11.5; post-PCI, 27.1 +/- 17.6 [P = .008]) and language (pre-PCI mean, 33.8 +/- 9.9; post-PCI, 31.0 +/- 9.0 [P = .049]) at early timepoints. Controlling for noncentral nervous system disease progression the deficit in executive function was no longer significant. Moreover, these deficits were not sustained, and significant improvements in language and motor coordination were recorded. On multivariate analysis, no significant differences before and after PCI were found. CONCLUSIONS: Neurocognitive testing demonstrated that a substantial portion of patients with SCLC had impaired brain functioning at baseline. Persistent declines in cognitive function were not observed after cranial irradiation. These data do not favor the omission of PCI on the basis of fears of neurotoxic effects.

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.

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.

Change in what matters to palliative patients: eliciting information about adaptation with SEIQoL-DW.

This study was carried out to investigate the usefulness of the SEIQoL-DW to elicit information about response shifts in palliative patients. The instrument measures individual quality of life and allows respondents to choose, rate and weight important areas of life (cues). We explored patients' reconceptualizations (ie, change in cues) and their value change (ie, change of cues weights). Results of 21 patients showed what mattered to these patients and how they had adjusted to deteriorating health. There is a risk that repeated measurements do not provide all the information that is potentially present and relevant to explore response shifts. But clear instructions to interviewers, such as careful listening, probing self-evident cues such as health and family, and accurate recording of cues on the forms may overcome this risk. Future research is recommended to explore the possibilities of regular assessments to facilitate better adjustment of patients.

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

Quality of life in lung cancer patients: impact of baseline clinical profile and respiratory status.

As cure is attainable in very few cases of lung cancer, the imperative issue is to make quality of life (QOL) as good as possible as part of the palliative care package. The aim of this paper was to evaluate the baseline QOL of lung cancer patients and observe its association with various clinical parameters and overall respiratory status. A total of 101 patients were administered the European Organization for Research and Treatment of Cancer core quality of life (EORTC QLQ-C30, version 3) questionnaire. Clinical profile and measures of respiratory status, including spirometry, measures of dyspnoea, and 6-min walk test, were recorded. Higher Karnofsky Performance Status (KPS) significantly correlated with better global health status (P < 0.001) and healthy level of functioning (P < 0.001). The cumulative symptom burden was significantly associated with global QOL (P = 0.01) and physical, role and cognitive function scales (P < 0.05). All dyspnoea measures negatively correlated with global QOL and functioning scales. Spirometric indices showed a positive correlation with all functional scales (P < 0.05) except social. In conclusion, lung cancer patients have unsatisfactory QOL, with the global health status and physical functions being most affected. Number of symptoms, KPS, dyspnoea and spirometry significantly affect QOL.

Small-cell lung cancer patients are just 'a little bit' tired: response shift and self-presentation in the measurement of fatigue.

BACKGROUND: Response shift has gained increasing attention in the measurement of health-related quality of life (QoL) as it may explain counter-intuitive findings as a result of adaptation to deteriorating health. OBJECTIVE: To search for response shift type explanations to account for counter-intuitive findings in QoL measurement. METHODS: Qualitative investigation of the response behaviour of small-cell lung cancer (SCLC) patients (n = 23) in the measurement of fatigue with The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) question 'were you tired'. Interviews were conducted at four points during 1st line chemotherapy: at the start of chemotherapy, 4 weeks later, at the end of chemotherapy, and 6 weeks later. Patients were asked to 'think aloud' when filling in the questionnaire. RESULTS: Fifteen patients showed discrepancies between their answer to the EORTC question 'were you tired' and their level of fatigue spontaneously reported during the interview. These patients chose the response options 'not at all' or 'a little' and explained their answers in various ways. In patients with and without discrepancies, we found indications of recalibration response shift (e.g. using a different comparison standard over time) and of change in perspective (e.g. change towards a more optimistic perspective). Patients in the discrepancy group reported spontaneously how they dealt with diagnosis and treatment, i.e. by adopting protective and assertive behaviour and by fighting the stigma. They distanced themselves from the image of the stereotypical cancer patient and presented themselves as not suffering and accepting fatigue as consequence of treatment. CONCLUSION: In addition to response shift, this study suggests that 'self-presentation' might be an important mechanism affecting QoL measurement, particularly during phases when a new equilibrium needs to be found.

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.

Quality of life in newly diagnosed patients with lung cancer in a developing country: is it important?

There are no data regarding quality of life (QoL) assessments in lung cancer in developing countries like India. Quality of life was evaluated in 76 newly diagnosed lung cancer patients by using the World Health Organization Quality of Life questionnaire in Hindi (WHOQoL-Bref) (men 87%). The mean age was 55 years (SD = 10). Cough, dyspnoea, chest pain and haemoptysis were present in 83%, 72%, 66% and 43% of patients respectively. The median duration of symptoms was 5.9 months (range 1-13). Eighty-nine per cent had non-small cell lung cancer. The median pack-years smoked was 23 (range 0.5-88). Most patients (53%) had a Karnofsky's Performance Status (KPS) of 70 and 83% had stage III or IV disease. Quality of life did not correlate with age, gender, presence or duration of symptoms, histological type, stage of disease or degree of smoking. The physical and psychological domains of QoL correlated significantly with the KPS (P = 0.001 and P = 0.01 respectively). Patients with a KPS of 80 had better physical (P < 0.001), psychological (P < 0.01) and social (P < 0.05) QoL than those with a KPS of 70. In conclusion, patients with lung cancer in a developing country like India have an unsatisfactory QoL. The Karnofsky's Performance Scale is a simple and reliable surrogate marker for assessing QoL in these patients. Larger multi-centric studies may help in providing a more comprehensive evaluation of the effect of various demographic and clinical variables on QoL in this setting.

Cigarette smokers views on their habit and the causes of their illness following lung cancer diagnosis: a clinical-qualitative study / Visão de fumantes sobre seu hábito e sobre as causas de sua doença após o diagnóstico de câncer de pulmão: um estudo clínico qualitativo

CONTEXT AND OBJECTIVE: Lung cancer is the commonest malignant tumor and is increasing in incidence by 2 percent a year. In 90 percent of diagnosed cases, it is associated with tobacco product consumption. It is the greatest cause of mortality among cancer types in Brazil. Knowledge of patientsÆ 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 intervieweesÆ observations, applied in a confidential setting using a tape recorder. IntervieweesÆ 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.

CONTEXTO E OBJETIVO: O câncer de pulmão é o mais comum dos tumores malignos, apresentando aumento de 2 por cento ao ano em sua incidência mundial. Em 90 por cento dos casos diagnosticados, está associado ao consumo de derivados de tabaco. No Brasil, é o câncer que mais faz vítimas fatais. É crucial aos médicos conhecer as representações psicológicas desses pacientes para preconizar tratamentos e educá-los. O objetivo deste trabalho é interpretar significados que fumantes com câncer de pulmão atribuem a possíveis causas da doença, bem como compreender percepções relacionadas ao uso do cigarro. TIPO DE ESTUDO E LOCAL: Desenho clínico-qualitativo (exploratório, não-experimental) realizado no Serviço de Pneumologia do Hospital das Clínicas da Universidade Estadual de Campinas, Campinas, São Paulo, Brasil. MÉTODOS: Amostra propositalmente pequena de pacientes internados com câncer; grupo fechado com 11 sujeitos quando ocorrida a saturação de informações das entrevistas. Entrevista semidirigida de questões abertas (entrevista em profundidade na observação acurada dos entrevistados) contendo poucos tópicos foi aplicada em ambiente confidencial, usando gravador de fita cassete. Após categorização do conjunto das falas, usando análise qualitativa de conteúdo, a discussão dos resultados empregou conceitos teóricos interdisciplinares, especialmente da psicologia médica. RESULTADOS: Entrevistamos seis homens e cinco mulheres, com idades variando entre 46 e 68 anos; sujeitos apresentando condições clínicas diversas. CONCLUSÃO: A compreensão psicológica desses pacientes exige uma abordagem mais ampla, considerando que o consumo de cigarros envolve motivações conscientes e inconscientes, fatores socioculturais e educacionais, glamourosa propaganda do tabaco e problemas de dependência físico-psíquica. Também evitaria o surgimento de figuras percebidas pelos pacientes como "inquisidores" dentre a equipe de saúde. Estas novas condições levariam à maior adesão ao tratamento e melhor qualidade de vida.

Open-label, multicenter, randomized, phase III study comparing oral topotecan/cisplatin versus etoposide/cisplatin as treatment for chemotherapy-naive patients with extensive-disease small-cell lung cancer.

PURPOSE: This open-label, randomized, multicenter phase III study compared oral topotecan/intravenous cisplatin (TC) with intravenous (IV) etoposide/cisplatin (PE) in patients with untreated extensive-disease small-cell lung cancer (ED-SCLC). PATIENTS AND METHODS: A total of 784 patients were randomly assigned to either oral topotecan 1.7 mg/m2/d x 5 with IV cisplatin 60 mg/m2 on day 5 (n = 389) or IV etoposide 100 mg/m2/d x 3 with IV cisplatin 80 mg/m2 on day 1 (n = 395) every 21 days. RESULTS: Overall survival (primary end point) was similar between groups (P = .48; median: TC, 39.3 weeks v PE, 40.3 weeks). One-year survival was 31% (95% CI, 27% to 36%) in both groups and the difference of -0.03 (95% CI, -6.53 to 6.47) met the predefined criteria of < or = 10% absolute difference for noninferiority of TC relative to PE. Response rates were similar between groups (TC, 63% v PE, 69%). Time to progression was slightly but statistically longer with PE (log-rank P = .02; median: TC, 24.1 weeks v PE, 25.1 weeks). The regimens were similarly tolerable. Grade 3/4 neutropenia occurred more frequently with PE (84% v 59%), whereas grade 3/4 anemia and thrombocytopenia occurred more frequently with TC (38% v 21% and 38% v 23%, respectively). Lung Cancer Symptom Scale scores were statistically better with PE, but the differences were small and of debatable clinical significance. CONCLUSION: Oral topotecan with cisplatin provides similar efficacy and tolerability to the standard (etoposide with cisplatin) in untreated ED-SCLC and may provide greater patient convenience compared with intravenous etoposide and cisplatin.