Breast/ovarian cancer genetic counseling: Do anxiety, depression, and health care-related fears influence cancer worry and risk perception?

BACKGROUND: The impact of family and personal cancer history and emotional factors, such as depression and anxiety, on disease representation has received limited attention in studies investigating the development of cancer-related worry and risk perception within the context of genetic counseling. The current study endeavors to fill this gap by exploring the extent to which depression and anxiety influence cancer worry and risk perception, and the role of health care-related fear as potential mediator in this relationship. METHODS: A sample of 178 women who underwent their first genetic counseling for breast/ovarian cancer, 52% of whom had previous cancer diagnoses, completed questionnaires assessing sociodemographic and clinical information, emotional distress in terms of anxiety and depression, cancer-related worry, risk perception, and health care-related fears. RESULTS: Results of mediation analyses showed that cancer-related worry and risk perception increased with rising levels of depression and anxiety, with health care-related fears acting as a mediator in the relationship of depression and anxiety with cancer worry and risk perception. Covariate analysis revealed that previous cancer diagnosis increases cancer-related worry but not risk perception, while the number of family members affected by cancer increases both outcomes. CONCLUSION: These findings emphasize the need for a holistic approach in genetic counseling and have implications for the clinical practice.

Moral Distress in Oncology: A Descriptive Study of Healthcare Professionals.

BACKGROUND: The oncology setting is characterized by various complexities, and healthcare professionals may experience stressful conditions associated with ethical decisions during daily clinical practice. Moral distress (MD) is a condition of distress that is generated when an individual would like to take action in line with their ethical beliefs but in conflict with the healthcare facility's customs and/or organization. This study aims to describe the MD of oncology health professionals in different care settings. METHODS: Descriptive quantitative study was conducted in the Operating Units of the Istituti Fisioterapici Ospitalieri in Rome between January and March 2022. The investigated sample consisted of the medical and nursing staff on duty at the facility, who were given a questionnaire through a web survey. Besides a brief sociodemographic form, the MD Scale-Revised questionnaire was used for data collection. RESULTS: The sample consisted of nurses (51%) and physicians (49%), predominantly working in surgeries (48%), and having 20-30 years of service (30%). MD was higher among healthcare professionals, in medicine than that ing in corporate organizations, surgeries, or outpatient clinics (p = 0.007). It was not related to the profession (p = 0.163), gender (p = 0.103), or years of service (p = 0.610). CONCLUSIONS: This paper outlines the prevalence of MD in care settings and describes its relationship with profession, gender, and seniority. There is no patient care without the care of health professionals: knowing and fighting MD improves the safety of the treatments provided and the quality perceived by patients.

Coping Style in Glioma Patients and Their Caregiver: Evaluation During Disease Trajectory.

Background: Patients with glioma have a poor prognosis and, in a short period of time, have to deal with severe forms of disability, which compromise their psychological distress and quality of life. The caregivers of these patients consequently carry a heavy burden in terms of emotional and patient care. The study aims to evaluate the coping strategies of patients and their caregivers during the course of the disease in order to frame the adaptation process in a rapidly progressing pathology. Methods: A prospective study on 24 dyads of patients affected by malignant glioma and their caregivers was conducted between May 2016 and July 2018. Questionnaires designed to identify the coping style (MINI-MaC Scale) and psychological distress (HADS scores) and assess QOL (EQ-5D) were administered at two time points: at first lines of treatment and at disease recurrence. Results: Patients and their caregiver structure adaptive coping strategies during the disease: a coping style oriented toward a fighting spirit prevails at baseline (Mini-Mac Mean 3.23); fatalism prevails at recurrence (Mini-Mac Mean 3.03). Psychological distress affects the coping style expressed: high levels of anxiety symptoms were found to be significantly associated with a coping style oriented toward anxious preoccupation, helpless-hopeless, and fatalism; low depressive symptoms were inversely correlated with fighting spirit coping style. Patients' and caregivers' perceptions of quality of life were correlated between them and with performance status assessed by clinicians. In a dyadic perspective, the adaptation of a member of the couple varies as a function of the other partner's coping style. Conclusions: Our data are in line with previous literature on cancer patients, demonstrating that coping style is not a persistent dimension of personality, but can change depending on the situation. Despite the disease rapid course, patients and their caregivers can structure adaptive and functional defenses to manage the disease.

Home care for brain tumor patients.

BACKGROUND: Brain tumor patients are quite different from other populations of cancer patients due to the complexity of supportive care needs, the trajectory of disease, the very short life expectancy, and resulting need for a specific palliative approach. METHODS: A pilot program of comprehensive palliative care for brain tumor patients was started in the Regina Elena National Cancer Institute of Rome in October 2000, supported by the Lazio Regional Health System. The aim of this model of assistance was to meet patient's needs for care in all stages of disease, support the families, and reduce the rehospitalization rate. The efficacy of the model of care was evaluated analyzing the place of death, caregiver satisfaction, rehospitalization rate, and the impact on costs to the health system. RESULTS: From October 2000 to December 2012, 848 patients affected by brain tumor were enrolled in a comprehensive program of neuro-oncological home care. Out of 529 patients who died, 323 (61%) were assisted at home until death, 117 (22.2%) died in hospital, and 89 (16.8%) died in hospice. A cost-effectiveness analysis demonstrated a significant reduction in hospital readmission rates in the last 2 months of life compared with the control group (16.7% vs 38%; P < .001). CONCLUSIONS: Our findings concerning death at home, rehospitalization rate, quality of life, and satisfaction of patients and their relatives with the care received suggest that a neuro-oncologic palliative home-care program has a positive impact on the quality of care for brain tumor patients, particularly at the end of life.

Epilepsy in the end-of-life phase in patients with high-grade gliomas.

Epilepsy is common in patients with brain tumors. Patients presenting seizures as the first sign of a malignant glioma are at increased risk of recurrent seizures despite treatment with antiepileptic drugs. However, little is known about the incidence of epilepsy in the last stage of disease and in the end-of-life phase of brain tumor patients. We retrospectively analyzed the incidence of seizures in the last months of life in a series of patients affected by high-grade gliomas who were assisted at home during the whole course of the disease until death. A total of 157 patients were available for analysis. Of these patients, 58 (36.9 %) presented seizures in the last month before death. The risk of seizures in the end-of-life phase is higher in patients presenting previous history of epilepsy, particularly in patients with late-onset epilepsy. Out of the 58 patients presenting seizures in the last month of life, 86.2 % had previously had seizures and 13.8 % were seizure free. Most patients may encounter swallowing difficulties in taking anticonvulsants orally due to dysphagia and disturbances of consciousness, thus anticonvulsant treatment needs to be modified in advance. Loss of seizure control in the end-of-life phase may influence the quality of life of patients and their caregivers.

Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study.

UNLABELLED: Despite aggressive multimodality treatment the prognosis of patients with primary brain tumors (BT) remains poor. At present, there are no data about the role of palliative home-care services and their impact on quality of care. We report the results of a pilot project of palliative home care for BT patients started in 2000 in the National Cancer Institute Regina Elena of Rome. We report also the result of a cost/effectiveness analysis utilizing administrative data on re-hospitalization rate in the last two months of life. METHODS: Since October 2000 until December 2009, 572 patients have been followed by our home care staff. Among 394 patients who died, 276 (70%) were followed at home until death. A cost/effectiveness analysis was carried out evaluating the rehospitalization rate in the last 2 months of life in a subgroup of patients (group 1 assisted at home, 72 patients; group 2 not assisted at home, 71). The number of hospital readmission in the last 2 months of life, and length and cost of hospitalization were retrospectively analyzed from hospital discharge records. RESULTS: Hospitalization rate of group 1 (16.7%) was lower than group 2 (38%) (95% CI: 0.18-0.65, p = 0.001). Costs of hospitalization also differed substantially: 517 Euros (95% CI: 512-522) in group 1 vs 24, 076 Euros (95%: 24,040-24,112 Euros) in group 2. CONCLUSION: Home-care may represent an alternative to in-hospital care for the management of brain tumor patients and may improve the end-of-life quality of care.

End of life issues in brain tumor patients.

Despite aggressive antitumor treatment, the prognosis of brain tumor (BT) patients remains poor. In the last stage of disease, BT patients present severe symptoms due to the growing tumor or to treatment side-effects, which require adequate palliative management and supportive therapy. However, studies specifically addressing palliative care and end-of-life (EoL) issues in BT patients are lacking. This study explores symptoms experienced by BT patients in the last weeks of disease and EoL issues observed in a population of brain tumor patients followed at home until death by a neuro-oncological home care palliative unit set up in our Institution in 2000. From October 2000 to December 2005, 324 patients affected by brain tumor and discharged from our Institution were enrolled in a comprehensive program of neuro-oncological home care supported by the Regional Health System. Out of 324 patients enrolled in the home care program, 260 patients died of which 169 (65%) were assisted at home until the end of life and have been included in this study. Clinical symptoms, palliative treatments and EoL treatment decisions were collected from home clinical records. Among the 169 patients assisted at home until death, the most frequent symptoms observed in the last four weeks of life were: epilepsy 30%, headache 36%, drowsiness 85%, dysphagia 85%, death rattle 12%, agitation and delirium 15%. Palliative management of brain tumor patients requires a multidisciplinary approach performed by a well trained neuro-oncology team. Development of home care models of assistance may represent an alternative to in-hospital care for the management of patients dying of brain tumor and may improve the quality of end-of-life care.