Claudia Yvonne Finocchiaro

Living with a brain tumor: Reaction profiles in patients and their caregivers

PurposeThe psychological burden induced by brain tumor is profound both for the sick person and for their own family. This particular tumor not only impacts patients’ quality of life, but also reduces seriously the caregivers’ quality of life. We aim to describe brain tumor patients and their caregivers’ quality of life during the illness and assess the existing relation between clinical and psychological features of patients and their caregivers.MethodsThe study involved 72 patients/caregivers couples. We used the following tools: Hospital Anxiety and Depression Scale (HADS), Functional Assessment of Cancer Therapy—Brain (FACT-Br) for patients and HADS, Caregiver Reaction Assessment Scale (CRA), 36-Item Short-Form Health Survey (SF-36) for caregivers.ResultsQuality of life was more compromised in caregivers than in their loved ones. The impairment of caregivers’ quality of life appeared mainly in a significant reduction in their mental health. Most caregivers experienced more depressive and anxiety symptoms, as compared with patients. Clinical and psychological features of patients did not correlate with psychological patterns of their own caregivers.ConclusionsIt is important to give caregivers appropriate help, care and support. Therefore, it is necessary to monitor and treat, if necessary, caregivers’ anxious or depressive symptomatology that impacts their quality of life, making them more helpless, frustrated and less able to handle the situation of disease and caregiving situation. It would be desirable to give caregivers the possibility of a psychological support and equally important would be a continuous teamwork aimed to promote a better caregivers’ adaptation to the patient’s illness.

The burden of brain tumor: a single-institution study on psychological patterns in caregivers

Quality of life and well-being in caregivers are usually partly neglected since all attention is focused on patients and the way they react to the illness. Carers also usually neglect their own needs, especially when the illness of the patient is as complex as a brain tumor. The aim of this study is to investigate how caregivers deal with a diagnosis of brain tumor in their relatives and how they manage their quality of life and psychosocial well-being. One hundred primary caregivers of patients with brain tumors were interviewed and were asked to fill in self–administered questionnaires detecting multidimensional levels of quality of life, anxiety, depression, and psychosocial reaction to the patient’s illness. Data were related with some functional and psychosocial information collected about the patient’s disease. Caregivers try to react to the illness of their relatives by mobilizing their physical reaction and growing their self-esteem, but they live with a clinically significant impairment of their quality of life, and experience a deep level of anxiety and depression. The caregivers’ burden appears mainly in their ability to provide care and in financial strain. The length of disease and the functional status of patients significantly influence caregivers’ psychosocial well-being. Despite the appearance they want to show their affected relatives, caregivers suffer from deep limitation in their quality of life. The relevance of caregivers’ burden suggests the importance of psychological support to improve reaction to the illness.

Cognitive strategies and quality of life of patients with high-grade glioma

The purpose of this study was to analyze the psychological well-being, quality of life, and cognitive strategies activated by patients with high-grade glioma. We hypothesized that the self-perceived quality of life is modulated by physical and psychological factors and that in order to understand this modulation more psychometric approaches are necessary. Data were collected from a sample of 73 consecutive patients with a histological diagnosis of primary malignant brain cancer (grade IV glioblastoma and grade III anaplastic astrocytoma) hospitalized in a specialized Italian center. The Functional Assessment of Cancer Therapy (FACT) scale and the Schedule of Evaluation of Individual Quality of Life–Direct Weighting (SEIQoL-DW) scale were used to assess quality of life. The mean FACT-Brain (Br) score was 122.37. Similarly, the median SEIQoL-DW score was 72.9 out of a maximum value of 100. No gender effect was found in relation to overall quality of life. Patients with high depression and/or anxiety scores reported lower quality of life (QoL) scores in all the instruments considered. We did not find any gender effect concerning depression and anxiety levels. However, we found that men and women, though having similar physical and functional well-being, reported different QoL determinants, since men seem to rely more on physical adjustment, while women activate more introspective strategies. Positive actions, family issues, negative thoughts, health, and positive thoughts were found to be the most reported themes. In conclusion, the present study strongly suggests that a positive psychological adjustment is possible also in the event of a severe diagnosis and during aggressive treatments, but QoL determinants might be considered too in order to help health professionals to understand patients’ experience and to meet their needs.

Caring for Brain Tumour Patients: Psychological reactions after bereavement.

Aim The aim of this study was to describe the changes in quality of life and in levels of anxiety and depression experienced by caregivers of patients with brain tumour 18 months after their bereavement. Methods This longitudinal study employed data from two time points: time 1, during the hospital stay of the caregivers loved one; and time 2, approximately 18 months after the death of the patient. A total of 51 caregivers agreed to participate in the study at both time points. We used the Hospital Anxiety and Depression Scale and the 36-Item Short Form Health Survey; we compared the data obtained at the two time points using the paired-samples t-test. Results Caring for someone with a brain tumour had a greater impact on the caregivers’ mental health than on their physical well-being. At time 2, the caregivers’ levels of anxiety and depression and psychological burden were decreased, indicating that they were in a better emotional state than they had been in time 1. However, the mean values in the depression, vitality, and mental health subscales were lower than those in the normative data, indicating that these caregivers had a worse psychological status than members of the normative group. Conclusion Our study underscores the necessity of supporting caregivers and monitoring their suffering levels; such suffering can compromise their social and work lives, not only during the disease trajectory but also in bereavement. Providing psychological and emotional support for caregivers of patients with brain tumour during both periods could lessen the suffering and unhappiness of these caregivers.

Consent and awareness: mental conditions at diagnosis

Informed consent is often talked about in an abstract manner, as if consent and information necessarily have to go together, and almost as if consent is “naturally” the quintessence of a good professional relationship in modern medicine. The United States is considered as the place of origin of informed consent. In Italy the concept of informed consent can be found for the first time in the 1990s. Informed consent is based on the principles of autonomy and benefit, on awareness and information. Already at the moment of the diagnosis, in addition to motor deficits, focal cognitive deficits are often present. It is important for the doctor to consider and evaluate the actual ability to comprehend and process the clinical situation on the part of the patient. At the Neuro-Oncology Division of the Carlo Besta Neurological Institute of Milan, we sought to analyse how and to what extent the brain tumour alters and conditions cognitive functionality, and hence the ability to process, comprehend and retain information during a diagnostic communication, and whether and how this moment is influenced by the presence of any global or specific cognitive deficits. Preliminary and performed on a numerically limited sample, 30 patients out of 42, in a specific neuropsychological survey, display cognitive attention and memory deficits despite achieving an adequate score on a global cognitive assessment. The physician’s attention to the cognitive faculties of a patient to whom a pathological condition and a therapeutic approach are being presented is fundamental.

Privacy-solidarity conflict: the communication with the support group

Actually guidelines require that patient must be informed about his condition so that he can choose the persons he wants to share these information with. Nonetheless, the caregiver usually gets an intermediary role in doctor–patient communication thus becoming the doctor’s main conversation partner and claiming to be given more information than the patient himself. A more complex situation is about brain tumours patients sometimes affected by cognitive deficiencies, compromising their comprehension skills or their capability of keeping the information they are being given. A preliminary study allowed to submit separately to brain tumour patients and their family members a semi-structured interview. Although doctors communicate diagnosis and therapeutic plans, patients and their family members often do not seem to remember the information they are given. An important percentage of patients and their carers cannot tell correctly what they was said by the doctors. Only a minor percentage of patients do not want to know all details of their disease. Instead, most of the family members, would rather their beloved were given just partial information on their conditions or even not given information at all. Communication with patients and their carers requires careful re-negotiation in a multiple time-points, rather than a one-off communication episode.

Hidden reality: sexual sphere in brain tumor patients

Abstract Most reports emphasize that tumors and their treatments affect sexual function. To date, no studies have focused on sexual functioning in patients with brain tumors. Our study’s objective is to describe the sexual sphere of patients with brain tumors and examine the possible differences between patients who reported sexual dysfunctions and those who did not with respect to their psychological and functional status. We tested 46 patients with brain tumors. We used an ad hoc questionnaire to assess patients’ subjective perception of their own sexual sphere. To assess patients’ psychological status, we used the following questionnaires: Hospital Anxiety and Depression Scale; Psychological Distress Inventory; EORTC QLQ-C30; EORTC QLQ-BN20. Fifty-eight percent of patients reported sexual disturbance. Our data showed that a lack of or decrease in sexual desire is the most common sexual problem reported by our patients (56%). Patients with sexual problems reported higher levels of anxiety and depression and a worse self-reported quality of life (QoL) than did those who did not perceive adverse changes in their sexual sphere. In addition, we found that patients with a better performance status (KPS) reported more changes in sexual behaviors than did those who had performance difficulties. Of the patients, 15.2% received information regarding possible changes in the sexual sphere by physicians. Additionally, 10.8 of 15.2% of the patients reported having explicitly requested information from physicians. The study demonstrated a relation between QoL and sexual function. Therefore, it would be important to encourage clinicians to ask questions regarding patients’ sexual issues, thus providing them with an opportunity to expose their difficulties and receive adequate support.

Bereavement in brain tumor: Psychological reactions in caregivers

WCN 2013 No: 2420 Topic: 36 — Other Topic Bereavement in brain tumor: Psychological reactions in caregivers C.Y. Finocchiaro, L. Rainoldi, A. Petruzzi, G. Simonetti, A. Silvani, E. Lamperti. Clinical Neurooncology Unit, Fondazione I.R.C.C.S. Istituto Neurologico ‘Carlo Besta’, Italy; Universita Vita-Salute San Raffaele,