57 results on '"Marcello Tamburini"'
Search Results
2. Phenomenology and Emotional Impact of Neuropsychiatric Symptoms in Orthotopic Liver Transplant for Hepatocellular Carcinoma
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Marcello Tamburini, A. Caraceni, Marco Bosisio, Laura Gangeri, Cinzia Brunelli, Vincenzo Mazzaferro, P. Serafin, and Carlo Alfredo Clerici
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Male ,Pediatrics ,medicine.medical_specialty ,Carcinoma, Hepatocellular ,Time Factors ,Clinical variables ,Hallucinations ,Emotions ,Neuropsychological Tests ,Delusions ,Interviews as Topic ,Cognition ,Orthotopic transplantation ,medicine ,Humans ,Postoperative phase ,Transplantation ,business.industry ,Liver Neoplasms ,Orthotopic Liver Transplant ,Middle Aged ,medicine.disease ,Liver Transplantation ,Surgery ,Hepatocellular carcinoma ,Female ,Cognition Disorders ,Liver cancer ,business ,Follow-Up Studies - Abstract
Background Few studies have focused on neuropsychiatric symptoms like hallucinations or delusions occurring in the early posttransplant period. The aim of this study was to estimate the percentage of patients reporting neuropsychiatric symptoms in the immediate postoperative phase, to describe the phenomenology, and to evaluate the emotional impact of such disorders. Method We studied 94 consecutive patients who underwent orthotopic liver transplant (OLT) for hepatocellular carcinoma at least 30 days prior. The presence of neuropsychiatric symptoms were retrospectively evaluated through a semistructured interview. Results Overall 49 patients (52%) reported various postoperative neuropsychiatric symptoms. None of the demographic and clinical variables showed significant associations, except for barbiturate administration; patients using barbiturates showed a lower percentage of neuropsychiatric symptoms. It was a time-limited phenomenon that in most cases resolved by day 7 after transplantation. Interestingly, the most frequent emotion perceived was surprise and not fear; a nontrivial amount of patients reported happiness, while many patients reported no emotion. Conclusions The results of this study suggested the usefulness of a registry of the neurological and psychiatric complications after OLT that may help to clarify the pathogenic mechanisms of such complications and implement uniform protocols of prevention and treatment. In fact, better knowledge of the phenomenology of neuropsychiatric symptoms in OLT recipients could allow easier symptom recognition and therapy adjustments on the basis of the emotional impact of such symptoms on patients, family, and caregivers, as well as increase patients’ awareness and capability to face this experience.
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- 2007
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3. Predicting survival in terminal cancer patients: clinical observation or quality-of-life evaluation?
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Eugenio Paci, Carlo Peruselli, Cinzia Brunelli, Marcello Tamburini, Michele Gallucci, Franco Toscani, Guido Miccinesi, Massimo Costantini, and Paola Di Giulio
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Male ,Oncology ,medicine.medical_specialty ,Palliative care ,Multivariate analysis ,Population ,MEDLINE ,050109 social psychology ,03 medical and health sciences ,Quality of life ,030502 gerontology ,Neoplasms ,Intensive care ,Internal medicine ,Humans ,Terminally Ill ,Medicine ,0501 psychology and cognitive sciences ,Prospective cohort study ,Intensive care medicine ,education ,Survival analysis ,Aged ,education.field_of_study ,business.industry ,05 social sciences ,General Medicine ,Middle Aged ,Prognosis ,Survival Analysis ,Anesthesiology and Pain Medicine ,Multivariate Analysis ,Quality of Life ,Female ,0305 other medical science ,business - Abstract
Introduction: This study compares the relative prognostic power of clinical variables and quality-of-life (QoL) measures in a population of terminal cancer patients. Methods: A prospective cohort study in 58 Italian Palliative Care Units. Of the 601 randomly selected terminal cancer patients, 574 were followed until death in order to compare clinical and QoL variables (using the Therapy Impact Questionnaire (TIQ) as predictors of survival, and assess whether their combined implementation makes prediction more accurate. Results: The clinical variables most strongly associated with survival were dyspnoea, cachexia, Katz's ADL, oliguria, dysphagia, dehydration, liver and acute kidney failure and delirium (hazard ratios (HR) ranging from 2.10 to 3.01). Only the first four kept their strength once introduced in the Cox model (HRs ranging from 1.95 to 2.22). In the TIQ primary scale the strongest predictors were physical wellbeing, fatigue, functional status and cognitive status (HRs ranging from 1.42 to 1.71), but only fatigue showed an independent prognostic relevance (90% of selection). In the TIQ global scales, the Physical Symptom Index showed a stronger association with survival (HR 1.71) than the Therapy Impact Index (HR 1.47). The former marginally improved the prognostic power of the model when added to clinical variables. Internal validation confirmed that the results were not spurious. Conclusions: In terminal cancer patients, clinical variables are better predictors of survival than QoL. The large residual variability not accounted for by the model (: ≈ 70%) suggests that survival is also influenced by factors unlikely to be identified in a survey.
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- 2005
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4. Candidates for liver transplantation for cancer: physical, psychological, and social conditions1
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Guido Miccinesi, Cinzia Brunelli, Claudia Borreani, Luciana Murru, Laura Gangeri, Marcello Tamburini, Paolo Boeri, and Vincenzo Mazzaferro
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Transplantation ,business.industry ,medicine.medical_treatment ,media_common.quotation_subject ,Liver transplantation ,Quality of life (healthcare) ,Minnesota Multiphasic Personality Inventory ,medicine ,Personality ,Personality test ,business ,Psychosocial ,Clinical psychology ,media_common ,Qualitative research - Abstract
Background. There is little knowledge of the psychological and social conditions of candidates for liver transplantation and the meaning that these patients attribute to those conditions. Methods. The research has been conducted with quantitative and qualitative methods. For the quantitative study, 80 patients were assessed with four evaluation instruments: the Interdisciplinary Group for Cancer Care Evaluation in Italy (GIVIO) questionnaire for quality of life, the Needs Evaluation Questionnaire (NEQ) for psychosocial needs, the Minnesota Multiphasic Personality Inventory (MMPI) personality test, and a questionnaire for the family's reactions to the illness. The qualitative evaluation was conducted to better understand the meaning of the transplantation as expressed by the patients, the integration of the new organ, and the symbolic relationship with the donor with particular attention to the different levels of patients' awareness. Results. The quantitative evaluation showed a good level of quality of life assessed by GIVIO and a low prevalence in the personality disorder scales detected by the MMPI. The patients' needs assessed by NEQ showed a high need of information about the future conditions (77%) followed by the need for more explanation of examinations (49%) and treatments (50%). The qualitative study identified and analyzed two opposite groups of five patients each: those who did not recognize and did not express any emotional experience and those who recognized and expressed a particularly intense emotional experience. Conclusion. The psychosocial condition of transplant candidates with liver cancer is characterized by an impact that is more psychological than physical. The qualitative analysis performed allows the hypothesis that the patient's level of awareness is an important indicator to predict the type of adaptation after transplantation.
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- 2002
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5. Characteristics of Terminal Cancer Patients Who Committed Suicide During a Home Palliative Care Program
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Carla Ripamonti, Vittorio Ventafridda, Paolo Contiero, Amadio Totis, Franco De Conno, Antonio Filiberti, and Marcello Tamburini
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Freedom ,Male ,Suicide Prevention ,medicine.medical_specialty ,Palliative care ,media_common.quotation_subject ,Emotions ,Suicide prevention ,Risk Factors ,Cause of Death ,Neoplasms ,medicine ,Humans ,Terminally Ill ,Personality ,Psychiatry ,General Nursing ,Aged ,media_common ,business.industry ,Medical record ,Palliative Care ,Middle Aged ,Home Care Services ,Suicide ,Anesthesiology and Pain Medicine ,Feeling ,Structured interview ,Female ,Neurology (clinical) ,Worry ,business ,Psychosocial - Abstract
Cancer patients may commit suicide at any stage of the disease and many risk factors of suicide have been described in the literature. To identify the possible vulnerability factors of suicide in five terminal cancer patients who committed suicide while they were cared for at home by well-trained palliative care teams, a psychological autopsy study was carried out by reviewing their medical records; their report of symptoms at the time of care; and with the caregivers', doctors', and nurses' recollection of events by means of a structured interview prepared ad hoc. We collected data regarding the physical, emotional, and social suffering of the patients, their personality profile, and their feelings with respect to the illness and disability. The interviews lasted for a mean of two hours and were performed from 2-8 years after the suicide events by the social worker at the Rehabilitation and Palliative Care Division. The interviews took place between June 1996 and January 1998. All the patients showed great concern about the lack of autonomy and independence, refused dependence on others and had fear/worry of losing their autonomy. Four patients presented functional and physical impairments, uncontrolled pain, awareness of being in the terminal stage, and mild to moderate depression. They had a feeling of hopelessness consequent to their clinical conditions, fear of suffering, and feeling of being a burden on others. They had a strong character and managerial professions. They had isolated themselves from others and they had previously talked about suicide. Before committing suicide, three patients had adverse physical/emotional consequences to the oncological treatments-they showed aggressiveness towards their family and one towards the home care physician. Multiple vulnerability factors were present simultaneously in all patients. However, the loss of, and the fear of losing, autonomy and their independence and of being a burden on others were the most relevant. The identification of a cancer patient at risk of committing suicide forms the first step for the prevention of and the setting up of adequate psychosocial rehabilitation of these patients whenever possible.
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- 2001
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6. The difficult choice of chemotherapy in patients with unresectable non-small-cell lung cancer
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Gianfranco Buccheri, Cinzia Brunelli, Domenico Ferrigno, and Marcello Tamburini
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Adult ,Male ,medicine.medical_specialty ,Lung Neoplasms ,Adolescent ,medicine.medical_treatment ,Decision Making ,Carcinoma, Non-Small-Cell Lung ,Surveys and Questionnaires ,Internal medicine ,Health care ,Humans ,Medicine ,Lung cancer ,Survival analysis ,Chemotherapy ,business.industry ,Respiratory disease ,Reproducibility of Results ,Cancer ,Guttman scale ,Middle Aged ,Patient Acceptance of Health Care ,medicine.disease ,Confidence interval ,Surgery ,Oncology ,Female ,business ,Attitude to Health - Abstract
The aims of this study were: to assess the attitude of non-small-cell lung cancer (NSCLC) patients to being treated with chemotherapy, determining whether and how much it differs from that expressed by patients with benign diseases or by healthy people; and to investigate how the information received about the treatment may influence the patients' decisions. A three-item self-assessment questionnaire measuring willingness to be treated with chemotherapy and presented according to three different scenarios (with an optimistic, neutral, and pessimistic physician's presentation) was administered to 104 NSCLC patients, 129 other patients with respiratory diseases (RDP), 140 health care providers (HCP) and 120 students (STU). Guttman's coefficient of reproducibility confirms the hierarchical structure of the three scenarios ranging from an optimistic to a pessimistic view. Relative to the other groups, cancer patients showed: (a) a consistently higher degree of uncertainty about whether to accept or reject chemotherapy; (b) the lowest acceptance rate in the optimistic and neutral scenario and, in contrast, the highest in the pessimistic scenario; (c) the highest percentage of constant answers, independently of the scenario presented, particularly as regards the answers "I don't know" (NSCLC = 25%, RDP = 9%, HCP = 2%, STU = 5%) and "Yes, I accept" (NSCLC = 29%, RDP = 31%, HCP = 19%, STU = 16%). Answer patterns differed markedly between cancer patients, the HCP, and the STU group, and in most cases the difference was statistically significant at a confidence level of 0.001. The differences between NSCLC and RDP patients were less marked, and not always statistically significant. The choice between accepting and rejecting chemotherapy is very difficult for patients with NSCLC, much more so than for healthy people, and it is often independent of the way the information is provided.
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- 2000
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7. Evaluation of Quality of Life in Patients with Malignant Dysphagia
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Cinzia Brunelli, Federico G. Cerrai, Giovanni Apolone, Paolo Boeri, Marcello Tamburini, Angelo Aldo Schicchi, Laura Gangeri, Paolo Pizzetti, and Paola Mosconi
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Male ,Oncology ,Cancer Research ,medicine.medical_specialty ,Esophageal Neoplasms ,Psychometrics ,Population ,030218 nuclear medicine & medical imaging ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,Surveys and Questionnaires ,Internal medicine ,medicine ,Humans ,In patient ,education ,Aged ,education.field_of_study ,business.industry ,Reproducibility of Results ,General Medicine ,Middle Aged ,Esophageal cancer ,medicine.disease ,Dysphagia ,humanities ,Test (assessment) ,Clinical research ,Italy ,030220 oncology & carcinogenesis ,Quality of Life ,Physical therapy ,Female ,medicine.symptom ,Deglutition Disorders ,business ,Malignant dysphagia - Abstract
Background In the last 10 years of clinical research there has been increasing interest in the evaluation of quality of life. Several generic and specific instruments have been developed for this purpose. EORTC QLQ C-30 is a cancer-specific questionnaire translated into various languages and validated in several European countries including Italy, where the impact of malignant disease on different areas of quality of life is poorly documented. Methods The EORTC QLQ C-30 was administered to 109 patients referred to the endoscopy division of the Istituto Nazionale Tumori, Milan, for endoscopic palliative treatment of malignant dysphagia to test its characteristics in terms of acceptability and clinical validity. Results In this group of patients the impact of advanced esophageal cancer was highly evident for Emotional and Physical Functioning, Fatigue and Global QoL scales. Dysphagia is a serious problem for many patients; there is a correlation between grade of dysphagia and four QoL dimensions. Conclusions QoL assessment is an important tool to evaluate the adequate management of patients with esophageal cancer. The EORTC QLQ-C30 questionnaire proved to be valid and reliable also in this population.
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- 2000
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8. [Untitled]
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E. Mencaglia, R. Gareri, Elisabetta Campora, Marcello Tamburini, M. Luzzani, Fausto Roila, Enrico Cortesi, Enzo Ballatori, Paolo G. Casali, Sergio Palmeri, L. Pastore, D.D. Candis, G. Baracco, S. Ragosa, L. Zoda, Lisa Licitra, Bruno Massidda, P.M. Angela, Massimo Costantini, A. Martignetti, Maria Teresa Ionta, S. Bulletti, S.D. Placido, and Paola Di Giulio
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medicine.medical_specialty ,Psychometrics ,business.industry ,Public health ,Public Health, Environmental and Occupational Health ,MEDLINE ,Disease ,Quality of life (healthcare) ,Content analysis ,Family medicine ,Health care ,medicine ,Meaning (existential) ,Psychiatry ,business - Abstract
Although the subjective nature of quality of life is generally accepted, less attention has been paid to the procedure of selecting domains to be explored with questionnaires. To explore what contributes to cancer patients' quality of life, a survey was conducted with the aim of identifying contents of quality of life using cancer patients as 'experts'. A questionnaire with open-ended items aimed at exploring the meaning of quality of life and at determining the contents of health and not health related quality of life, was submitted to a sample of cancer patients stratified by residence, cancer site and stage of disease. The 248 questionnaires received were transcribed and broken down into phrases to allow coding. A content analysis was performed, using as a conceptual framework, the domains identified by the Italian Society of Psycho-Oncology. Overall, 43 domains and a list of symptoms were identified. The two most frequently reported symptoms were pain (21.4% patients) and fatigue (14.1% patients). Social relationships and psychological domains were heavily represented. Twenty sub-domains related to the domain 'psychological well-being'. This study suggests that information on the content of quality of life questionnaires to be submitted to people affected by a specific disease, should be derived by studying people suffering the specific disease. These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of health professionals than patients.
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- 2000
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9. Terminal Cancer Patients and Timing of Referral to Palliative Care A Multicenter Prospective Cohort Study
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F. Toscani, Julia Addington-Hall, Cinzia Brunelli, Guido Miccinesi, Carlo Peruselli, P. Di Giulio, Marcello Tamburini, Eugenio Paci, Irene J Higginson, Marcello Gallucci, and Massimo Costantini
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Pediatrics ,medicine.medical_specialty ,Palliative care ,Referral ,business.industry ,Middle age ,Discontinuation ,Clinical trial ,Anesthesiology and Pain Medicine ,Medicine ,Neurology (clinical) ,business ,Prospective cohort study ,General Nursing ,Survival analysis ,Cohort study - Abstract
This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.
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- 1999
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10. Quality-of-Life Evaluation
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Eugenio Paci, Marcello Tamburini, Carlo Peruselli, Cinzia Brunelli, F. Toscani, Massimo Piazza, Michele Gallucci, Paola DiGiulio, Piero Morino, Flavio Fusco, Guido Miccinesi, and Massimo Costantini
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Gerontology ,medicine.medical_specialty ,Palliative care ,business.industry ,MEDLINE ,Terminal cancer ,Proxy (climate) ,Clinical trial ,Anesthesiology and Pain Medicine ,Quality of life (healthcare) ,Family medicine ,Psychological well-being ,Health care ,Medicine ,Neurology (clinical) ,business ,General Nursing - Abstract
A multicenter study involving six palliative care units in Italy was carried out on 159 terminal cancer patients seen at home or in hospital. The physician or the nurse completed independently from the patient the Therapy Impact Questionnaire (TIQ), a questionnaire devised for quality-of-life evaluation in terminal cancer patients. The patient's assessment was used as the valid reference measurement to compare with the health-care workers' evaluation to assess the validity of the latter. The results showed that percentages of agreement were higher for physical than for psychological and cognitive symptoms, and that there was a greater agreement on the absence rather than on the presence of a problem. None of the characteristics of the patient nor of the proxy showed any statistically significant relationship with the two disagreement indexes. The results suggest that caution is needed in the use of health-care workers as alternative sources of information regarding patients' quality of life.
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- 1998
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11. The code of conduct of the volunteer
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Alessandro Suprani, Claude Fusco-Karmann, Amedeo Santosuosso, and Marcello Tamburini
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Male ,Volunteers ,Code of conduct ,Service (business) ,business.industry ,Organizations, Nonprofit ,Nursing research ,media_common.quotation_subject ,Freedom of choice ,Public relations ,Discretion ,Financial management ,Italy ,Oncology ,Humans ,Medicine ,Female ,business ,Ratification ,Autonomy ,media_common - Abstract
Voluntary service has experienced a considerable expansion and a substantial change over the last two decades. The role of the volunteer has gradually come to interact with activities undertaken by other professionals, but without interfering. Since the role of the volunteer naturally involves autonomy and discretion on his/her behalf, the associations concerned increasingly feel the need to refer to standards defining a voluntary service ethic. Within a refresher course with a set number of places for non-profit-making organisations, which was arranged by the Italian League against Cancer, Milan, a consensus conference for the ratification of a code of conduct on voluntary service was held. The aim was to reach a consensus together with others who work in an "organised" manner every day, on ethical concepts that should inspire voluntary service: the common good, mutual respect, freedom of choice, a non-profit-oriented vision. After exhaustive discussions by three panels, the text of a code of conduct unanimously approved was elaborated. All concerned with this code tried to avoid giving it a "sanitary" imprint. It is in fact our opinion that whatever the area covered by voluntary service, its aim and its final objective is to ensure the wellbeing of mankind and his environment.
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- 1998
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12. L'Impatto Della Patologia Neoplastica Sullo Stato di Benessere Del Paziente
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Enrico Cortesi, E. Cortesi, Massimo Costantini, Bruno Massidda, Enzo Ballatori, Paolo G. Casali, Marcello Tamburini, Lisa Licitra, F. Roila, E. Mencaglia, and P. Di Giulio
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Cancer Research ,Oncology ,business.industry ,Medicine ,General Medicine ,business - Abstract
The peculiar characteristics of the italian neoplastic patients, as far as their knowledge concerning the disease (information, prognosis, therapeutic options, etc) and the different cultural, environmental and health realities, place different problems on the routine application of the quality of life questionnaires wich were constructed and edited in North European or North American Countries, even if correctly translated and validated in Italy. The QVonc (Quality of Life in Oncology) Project started five years ago from the common interest of medical oncologists who felt the need to make a careful study on some aspects regarding the evaluation of italian patient's quality of life. A multidisciplinary working group, comprehensive of statisticians, epidemiologists, psychologists, nurses and methodologists, was then put together. During the last three years the Group produced a deep analysis of the different aspects and determinants of the italian patient's quality of life, mainly about their disease and medical environment perception. A prospective research was started in 1995 with the aims of identifying the contents of quality of life, using a sample of cancer patients as “experts” and of measuring the relevance of selected contents in different subgroups of patients. In the first study the quality of life dimensions were analysed as perceived from 248 neoplastic patients, uniformely and randomly distributed for pathology and place of residence in Italy, through an open questionnaire and interviews conducted by our psychologists. Some peculiar aspects of the quality of life perception in italian patients were evidenced: relationship with the family, with the medical team and health facilities, economic problems and occupational difficulties. The study confirmed that the information on the contents of quality of life can be derived only studying people suffering the specific disease and cast a doubt on the available QL instruments currently used. The second study evaluated the quality of life perception in 6939 consecutive cancer patients referred in the second week of July 1996 to 79 Italian medical oncology/radiotherapy Institutions. Patients were asked to fill out a questionnaire concerning the importance of 46 domains of QL, each one scored on 4 levels (not at all, a little, much and very much). Domains were derived from a previous content analysis of 268 pts answers to 4 questions related to their own QL: “in your experience, what is QL?”, “what is a bad QL?”, “what is a good QL?”, “Did the diagnosis and treatment received modify your QL?”. 6939 patients entered the study; of these, 820 (11.8%) did not fill out the questionnaire due to various reasons. Among the 6,119 evaluable pts, the most frequent cancers were: breast (2,328), colo-rectal (968), lung (517), lymphoma (351), gastric (225). The most frequently chosen domains (much or very much) were related to health facilities or communication between patient-physician/nurse. Family relationship and general well being were also found important, while from the negative perspective the presence of the disease and the related anxiety were the most relevant problems. In conclusion, when choosing or constructing QL instruments, at least for Italian cancer pts, factors such as health facilities and pt ‘- physician/nurse relationship should be more adequately considered. Most currently used QL questionnaires are probably lacking in this regard.
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- 1998
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13. Italian consensus on a curriculum for volunteer training in oncology
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Laura Gangeri, Marcello Tamburini, Gianna Tinini, and Claude Fusco-Karmann
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Adult ,Male ,Oncology ,medicine.medical_specialty ,education ,Hospital Volunteers ,Formative assessment ,Neoplasms ,Internal medicine ,medicine ,Humans ,Curriculum ,General Nursing ,Service (business) ,Public health ,Guideline ,Middle Aged ,Comprehension ,Hospice Care ,Anesthesiology and Pain Medicine ,Italy ,Female ,Neurology (clinical) ,Psychology ,Educational program ,Psychosocial - Abstract
Volunteers' education, together with selection and organization, are fundamental for an adequate volunteer service in oncology, which is focused on patient and family needs and is fully integrated with the activity of the care team. To achieve such an aim, well-defined requirements and educational objectives are essential. A curriculum for voluntary service in oncology was developed through a consensus of experts. By comparing the work carried out by six different teams, a questionnaire was drafted, which grouped 91 educational aims. For each, the questionnaire queried whether the aim was relevant or not, and, if yes, whether it should be pursued through (a) knowledge, (b) skill, and/or (c) attitude (with a possible multiple answer). To improve comprehension, the questionnaire was divided into five sections: (a) the association; (b) the disease, therapies, and care site; (c) voluntary service in oncology; (d) psychosocial aspects of the patient and family; and (e) approach, communication, and acceptance. The questionnaire was sent to 117 delegates from 93 Italian volunteer organizations who, during a period of 8 years, had attended a course for volunteers trainers held by the Italian League Against Cancer. As indicated in the letter forwarded with the questionnaire, the final document would report only the aims considered relevant by at least 70% of the participants. Moreover, the area(s) of pursuit (knowledge, skill, and attitude) would be stated for each goal when indicated by at least one-half of the participants. Of 117 individuals questioned; 83 (71%) replied. Of the 91 aims proposed, 60 were considered relevant, and a type of approach (knowledge, skill, and/or attitude) was suggested. The formative curriculum of voluntary service in oncology represents a consensual guideline for future training programs.
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- 1996
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14. Psychosocial adaptation after liver transplantation with particularreference to recipients aware of their cancer
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M. Camisasca, E. Mencaglia, Marcello Tamburini, Laura Gangeri, Antonio Filiberti, Enrico Regalia, Michela Quagliuolo, Vincenzo Mazzaferro, and Andrea Pulvirenti
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Adult ,Liver Cirrhosis ,Male ,Pediatrics ,medicine.medical_specialty ,Coping (psychology) ,Cirrhosis ,Sexual Behavior ,medicine.medical_treatment ,Liver transplantation ,Projective Techniques ,Minnesota Multiphasic Personality Inventory ,MMPI ,Adaptation, Psychological ,Humans ,Medicine ,Interpersonal Relations ,business.industry ,Liver Neoplasms ,General Medicine ,Middle Aged ,medicine.disease ,Tissue Donors ,Liver Transplantation ,Surgery ,Transplantation ,surgical procedures, operative ,Oncology ,Life expectancy ,Female ,business ,Liver cancer ,Psychosocial - Abstract
This study investigated the psychosocial adjustment in 40 patients who received orthotopic liver transplantation (OLT)for several endstage liver diseases. Twenty patients were grafted because they suffered from liver cancer as well as cirrhosis. Particular attention was paid to evaluating whether cancer could affect recipients' coping with transplant. Each patient underwent a semi-structured interview to obtain information on their psychosocial life, relationship with the donor, organ acceptance and life expectancy. Interview was performed I year after transplantation. A psychodiagnostic evaluation was also performed using a Minnesota Multiphasic Personality Inventory (MMPI) and a Human Figure Test. Psychosocial adaptation in everyday life following liver transplantation seemed good in most of the patients, whatever the indication for transplantation might be. It can be seen that by replacing the diseased organ a high percentage of oncological patients overcame their fear of cancer.
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- 1996
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15. Psychological aspects of genital human papillomavirus infection: a preliminary report
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G. Bandieramonte, M. Merola, Marcello Tamburini, Antonio Filiberti, B. Stefanon, Vittorio Ventafridda, and G De Palo
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Adult ,Male ,Personality Tests ,Genital Neoplasms, Female ,Visual analogue scale ,Sexual Behavior ,media_common.quotation_subject ,Alpha interferon ,Human sexuality ,Anxiety ,Developmental psychology ,Genital Human Papillomavirus Infection ,Surveys and Questionnaires ,medicine ,Humans ,Personality ,media_common ,Depression ,HPV infection ,Interferon-alpha ,Obstetrics and Gynecology ,Fear ,Middle Aged ,medicine.disease ,Affect ,Psychiatry and Mental health ,Clinical Psychology ,Sexual intercourse ,Dyspareunia ,Sexual Partners ,Reproductive Medicine ,Condylomata Acuminata ,Guilt ,Female ,Laser Therapy ,medicine.symptom ,Psychology ,Attitude to Health ,Clinical psychology - Abstract
Genital human papillomavirus (HPV) infection can lead to self-inflicted blame and hypochondriac fears as well as to problems with sexuality. The aim of this study was to assess the psychological and psychodynamic aspects of patients with widespread genital HPV infection entering into a clinical trial in which they were randomly assigned to three treatment groups: CO2 laser ablation, intramuscular interferon-alpha, CO2 laser ablation plus intramuscular interferon-alpha. Fifty-one patients were studied. Patients were asked to take a series of questionnaires which included a self-rating questionnaire for gathering information on sexuality, emotional relationship with the partner and social life. A visual analog scale was used to rate intensity of pain during sexual intercourse. Each patient went also through an in-depth interview with a clinical psychologist and filled out two personality tests to measure depression (CDQ = IPAT depression test) and anxiety (ASQ = IPAT anxiety test). Results indicated a high percentage of sexual impairments after therapy (28 cases), presence of fear of cancer (14 cases) and worsenings in the emotional relationship with the partner. No difference was found among groups of treatment.
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- 1993
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16. Consensus Development Conference: Assessment of the Quality of Life in Cancer Clinical Trials
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Michele Tomamichel, Cristina Wuhrer, Cinzia Martini, Renato Talamini, Patrizia Buda, A. Scanni, Francesco Nicosia, Giovanni Apolone, Stefano Rosso, Maurizio Bonsignori, Gianfranco Belli, Rosanna Scancarello, E. Mencaglia, Eleonora Donatella Capovilla, F. Toscani, Carlo Peruselli, Roberto Labianca, Dino Amadori, Eugenio Paci, Laura Gangeri, Gabriella Morasso, Claudia Borreani, Milena Sant, L. Frontini, Marcello Tamburini, Aron Goldhrisch, P. Valagussa, Gianfranco De Carli, Valter Torri, Francesco Cianfriglia, Maria Antonietta Annunziata, Oscar Corli, Rino Tumolo, Antonio Filiberti, Massimo Costantini, Giorgio Trizzino, A. Gamba, Mario V. Fiorentino, and Augusto Caraceni
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Cancer Research ,medicine.medical_specialty ,business.industry ,Cancer clinical trial ,05 social sciences ,050109 social psychology ,General Medicine ,03 medical and health sciences ,Oncology ,030502 gerontology ,Medicine ,0501 psychology and cognitive sciences ,0305 other medical science ,business ,Consensus development ,Intensive care medicine - Published
- 1992
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17. Psychosocial adjustment of patients surgically treated for head and neck cancer
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Llaria M. Grosso, Marcello Tamburini, Maria Romano, Giulio Cantù, Roberto Molinari, Vittorio Ventafridda, and A. Gamba
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Adult ,Male ,medicine.medical_specialty ,Esthetics ,Sexual Behavior ,medicine.medical_treatment ,Disease ,Postoperative Complications ,Internal medicine ,Body Image ,Humans ,Medicine ,Outpatient clinic ,Family ,Interpersonal Relations ,Social isolation ,Aged ,Rehabilitation ,business.industry ,Head and neck cancer ,Middle Aged ,Disfigurement ,medicine.disease ,Psychosocial support ,Surgery ,Otorhinolaryngology ,Head and Neck Neoplasms ,Face ,Female ,medicine.symptom ,business ,Social Adjustment ,Psychosocial ,Follow-Up Studies - Abstract
Sixty-six patients, surgically treated for head and neck cancer and free of disease, were interviewed at the outpatient clinic from 6 months to 8 years after surgery. The patients were divided by the physician into two groups, according to the patients' degree of disfigurement, i.e., minor (24 patients, 36%, minor disfigurement group = MDG) or extensive (42 patients, 64%, extensive disfigurement group = EDG). Subsequently, the patients were interviewed with close-ended questions. The following subjective aspects were assessed: self-image; relationship with the partner, family, and friends; and the overall impact of the therapy. The results of the study showed a significantly higher impact in the EDG versus the MDG as regards a changed self-image (57% vs 25%, P less than 0.05), a worsened relationship with the partner (27% vs 0%, P less than 0.05), a reduced sexuality (74% vs 39%, P less than 0.01), and an increased social isolation (36% vs 12%, P less than 0.05). On the whole, 18% of the subjects stated that the disadvantages of therapy outweighed the advantages, and 30% fell that the difficulties encountered were "too harsh." In such cases, the opportunity of setting up a rehabilitation program offering psychosocial support should be considered.
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- 1992
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18. Caregiver Burden
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Claudia Borreani and Marcello Tamburini
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- 2009
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19. CONTRIBUTORS
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Judith A. Aberg, Amy P. Abernethy, Janet L. Abrahm, Michael Adolph, Michael Aherne, K. Allsopp, Rogelio Altisent, Carmen Fernandez Alvarez, Pablo Amigo, Wendy G. Anderson, Sik Kim Ang, Tiziana Antonelli, John Armstrong, Wendy S. Armstrong, Robert M. Arnold, Pilar Arranz, Koen Augustyns, Isabel Barreiro-Meiro Sáenz-Diez, Pilar Barreto, Debra Barton, Ursula Bates, Maria B. Fernandez-Creuchet Santos, Jacinto Bátiz, Costantino Benedetti, Nabila Bennani-Baiti, Michael I. Bennett, Kevin Berger, Mamta Bhatnagar, Lesley Bicanovsky, Lynda Blue, Barton Bobb, Jean-Jacques Body, Gian Domenico Borasio, Claudia Borreani, Federico Bozzetti, Valentina Bozzetti, Jason Braybrooke, William Breitbart, Barry Bresnihan, Bert Broeckaert, Eduardo Bruera, Kay Brune, Bradley Buckhout, Phyllis N. Butow, Ira Byock, Anthony Byrne, Clare Byrne, Beryl E. Cable-Williams, Sarah E. Callin, David Casarett, David Casper, Eric J. Cassell, Barrie Cassileth, Emanuele Castagno, Carlos Centeno, Walter Ceranski, Lucas Ceulemans, Meghna Chadha, Bruce H. Chamberlain, Eric L. Chang, Victor T. Chang, Harvey Max Chochinov, Edward Chow, Grace Christ, Katherine Clark, Stephen Clarke, Josephine M. Clayton, James F. Cleary, Lawrence J. Clein, Katri Elina Clemens, Libby Clemens, Robert Colebunders, Steven R. Connor, Viviane Conraads, Colm Cooney, Massimo Costantini, Azucena Couceiro, Holly Covington, John D. Cowan, Patrick Coyne, Garnet Crawford, Brian Creedon, Hilary Cronin, Garret Cullen, Jennifer E. Cummings, David C. Currow, Paul J. Daeninck, Pamela Dalinis, Prajnan Das, Mellar P. Davis, Sara N. Davison, Catherine Deamant, Liliana de Lima, Conor P. Delany, Peter Demeulenaere, Lena Dergham, Noël Derycke, Rajeev Dhupar, Mario Dicato, Edwin D. Dickerson, Andrew Dickman, Maria Dietrich, Pamela Dixon, Philip C. Dodd, James T. D'Olimpio, Per Dombernowsky, Michael Dooley, Deborah Dudgeon, Geoffrey P. Dunn, David Dunwoodie, Jane Eades, Badi El Osta, Katja Elbert-Avila, John Ellershaw, Bassam Estfan, Louise Exton, Alysa Fairchild, Matthew Farrelly, Konrad Fassbender, Jason Faulhaber, Kenneth C.H. Fearon, Lynda E. Fenelon, Peter F. Ferson, Petra Feyer, Marilene Filbet, Pam Firth, Susan F. FitzGerald, Hugh D. Flood, Francesca Crippa Floriani, Paul J. Ford, Barry Fortner, Darlene Foth, Bridget Fowler, Karen Frame, Thomas G. Fraser, Fred Frost, Michael J. Fulham, Pierre R. Gagnon, Lisa M. Gallagher, Maureen Gambles, Subhasis K. Giri, Paul Glare, Cynthia R. Goh, Xavier Gómez-Batiste, Leah Gramlich, Luigi Grassi, Phyllis A. Grauer, Claire Green, Gareth Griffiths, Yvona Griffo, Hunter Groninger, David A. Gruenewald, Jyothirmai Gubili, Terence L. Gutgsell, Elizabeth Gwyther, Paul S. Haber, Achiel Haemers, Mindi C. Haley, Mazen A. Hanna, Janet R. Hardy, Jodie Haselkorn, Katherine Hauser, Cathy Heaven, Michael Herman, Jørn Herrstedt, Stephen Higgins, Irene J. Higginson, Joanne M. Hilden, Kathryn L. Hillenbrand, Burkhard Hinz, Jade Homsi, Kerry Hood, Juliet Y. Hou, Guy Hubens, Peter Hudson, John G. Hughes, John Hunt, Craig A. Hurwitz, James Ibinson, Nora Janjan, Birgit Jaspers, Thomas Jehser, A. Mark Joffe, Laurence John, Jennie Johnstone, J. Stephen Jones, Javier R. Kane, Matthew T. Karafa, Andrew P. Keaveny, Dorothy M.K. Keefe, Catherine McVearry Kelso, Rose Anne Kenny, Martina Kern, Dilara Seyidova Khoshknabi, Jordanka Kirkova, Kenneth L. Kirsh, David W. Kissane, Eberhard Klaschik, Seref Komurcu, Kandice Kottke-Marchant, Kathryn M. Kozell, Sunil Krishnan, Deborah Kuban, Damian A. Laber, Ruth L. Lagman, Rajesh V. Lalla, Deforia Lane, Philip J. Larkin, Wael Lasheen, Peter Lawlor, Susan B. LeGrand, Vincent Lens, Dona Leskuski, Pamela Levack, Marcia Levetown, Jeanne G. Lewandowski, William R. Lewis, S. Lawrence Librach, Wendy G. Lichtenthal, J. Norelle Lickiss, Stefano Lijoi, Edward Lin, Arthur G. Lipman, Jean-Michel Livrozet, Mari Lloyd-Williams, Richard M. Logan, Francisco López-Lara Martín, Charles L. Loprinzi, John Loughnane, Michael Lucey, Laurie Lyckholm, Carol Macmillan, Frances Mair, Stephen N. Makoni, Bushra Malik, Kevin Malone, Marco Maltoni, Aruna Mani, Lucille R. Marchand, Darren P. Mareiniss, Anna L. Marsland, Joan Marston, Julia Romero Martinez, Isabel Martínez de Ubago, Lina M. Martins, Timothy S. Maughan, Catriona Mayland, Susan E. McClement, Ian McCutcheon, Michael F. McGee, Neil McGill, Stephen McNamara, Mary Lynn McPherson, Henry McQuay, Regina McQuillan, Robert E. McQuown, Michelle Meiring, Sebastiano Mercadante, Elaine C. Meyer, Randy D. Miller, Yvonne Millerick, Roberto Miniero, Armin Mohamed, Busi Mooka, Helen M. Morrison, J. Cameron Muir, Fiona Mulcahy, Hugh E. Mulcahy, Monica Muller, H. Christof Müller-Busch, Scott A. Murray, Friedemann Nauck, Katherine Neasham, Busisiwe Nkosi, Simon Noble, Antonio Noguera, Anna K. Nowak, Juan Nuñez-Olarte, Eugenie A.M.T. Obbens, Tony O'Brien, Megan Olden, Norma O'Leary, David Oliver, David Oliviere, Aurelius G. Omlin, Kaci Osenga, Diarmuid O'Shea, Christophe Ostgathe, Faith D. Ottery, Michel Ouellette, Edgar Turner Overton, Moné Palacios, Robert Palmer, Teresa Palmer, Carmen Paradis, Armida G. Parala, Antonio Pascual-López, Steven D. Passik, Timothy M. Pawlik, Malcolm Payne, Sheila Payne, Silvia Paz, José Pereira, George Perkins, Karin Peschardt, Hayley Pessin, Douglas E. Peterson, Vinod K. Podichetty, Robin Pollens, Eliza Pontifex, Susan Poole, Josep Porta-Sales, Graeme Poston, Ruth D. Powazki, William Powderly, Leopoldo Pozuelo, Eric Prommer, Christina M. Puchalski, Lukas Radbruch, David F.J. Raes, Jane Read, Anantha Reddy, Steven I. Reger, Susan J. Rehm, Stephen G. Reich, Javier Rocafort, Adam Rosenblatt, Cynda Hylton Rushton, K. Mitchell Russell, Karen Ryan, Lisa A. Rybicki, Paola Sacerdote, Vinod Sahgal, Mary Ann Sammon, Dirk Sandrock, Mark Sands, Denise L. Schilling, Valerie Nocent Schulz, Lisa N. Schum, Peter Selwyn, Joshua Shadd, Charles L. Shapiro, Aktham Sharif, Helen M. Sharp, Kirk V. Shepard, J. Timothy Sherwood, Nabin K. Shrestha, Richard J.E. Skipworth, Howard S. Smith, Mildred Z. Solomon, Diego Soto de Prado Otero, Denise Wells Spencer, Ron Spice, David Spiegel, Manish Srivastava, John N. Staffurth, Randall Starling, Grant D. Stewart, Jan Stjernswärd, Florian Strasser, Edna Strauss, Imke Strohscheer, Brett Taylor Summey, Graham Sutton, Nigel P. Sykes, Alan J. Taege, Marcello Tamburini, Yoko Tarumi, Davide Tassinari, Martin H.N. Tattersall, Karl S. Theil, Keri Thomas, Adrian Tookman, María P. Torrubia, Anna Towers, Daphne Tsoi, Rodney O. Tucker, James A. Tulsky, Rachel A. Tunick, Claire Turner, Martha L. Twaddle, Marie Twomey, Christina Ullrich, Catherine E. Urch, Mary L.S. Vachon, Bart Van den Eynden, Antonio Vigano, Erika Vlieghe, Angelo E. Volandes, Raymond Voltz, Paul W. Walker, Sharon Watanabe, Michael A. Weber, Elizabeth Weinstein, Sharon M. Weinstein, Kathryn L. Weise, Sherri Weisenfluh, John Welsh, Clare White, Donna M. Wilson, Joanne Wolfe, Tugba Yavuzsen, Albert J.M. Yee, Lisa M. Yerian, and Elena Zucchetti
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- 2009
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20. Death and dying: perceptions and attitudes in Italy
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Giorgio Di Mola, Maurizio Mori, Amedeo Santosuosso, Marcello Tamburini, Franco Toscani, and Laura Cantoni
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media_common.quotation_subject ,Gender studies ,General Medicine ,Disease ,Geographic distribution ,Sample group ,03 medical and health sciences ,0302 clinical medicine ,Anesthesiology and Pain Medicine ,Feeling ,030502 gerontology ,030220 oncology & carcinogenesis ,Perception ,Area of residence ,Sociology ,0305 other medical science ,Italian culture ,Cult ,Demography ,media_common - Abstract
This research was started in Italy at the end of 1988. Its aim was to identify and describe how people perceive death, and to define its prevalence in the minds of people. Three key issues were studied: (1) the idea of death and the feelings it stirs in people; (2) the cult of the dead; (3) the death—disease relationship. The research was conducted by telephone interviews using a questionnaire comprising 17 multiple-choice questions and one question with an open reply. A thousand people were interviewed from a sample group best representing the Italian population in terms of geographic distribution, area of residence, sex, age, education, and profession. Our research highlighted that Italian culture, whether secular or catholic, is hardly used to thinking about death. The tendency is for Italians to relate death to disease, especially in the case of cancer, and death is therefore something to be shunned and feared. Nevertheless, a new and culturally innovative need is emerging in Italy, where it is felt that patients should be given the responsibility for and the option of choosing not only their own treatment, but also the way in which to live and die. This finding is extremely important because it clearly proves that patients have a growing awareness of their right to self-determination. Nevertheless, society also has the obligation to make sure that patients in the terminal phase of life are not abandoned or merely left to chance.
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- 1991
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21. Symptom Prevalence and Control during Cancer Patients’ Last Days of Life
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B R Cassileth, F. De Conno, Marcello Tamburini, Carla Ripamonti, and Vittorio Ventafridda
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medicine.medical_specialty ,Palliative care ,business.industry ,Sedation ,Cancer ,General Medicine ,Disease ,medicine.disease ,03 medical and health sciences ,0302 clinical medicine ,Terminal Sedation ,030220 oncology & carcinogenesis ,Internal medicine ,medicine ,Vomiting ,Delirium ,030212 general & internal medicine ,medicine.symptom ,Prospective cohort study ,business - Abstract
The lack of control of physical suffering among cancer patients in the last days or hours of life is a common medical problem but it is rarely discussed in an open fashion. We carried out a prospective study of the dying of 120 terminal cancer patients assisted by a home care team. We documented how long it was before death that physical symptoms, unendurable to the patient and controllable only by sedation-inducing sleep, appeared. In 63 patients (52.5%), unendurable symptoms due to tumor progression or irreversible acute organic phenomena appeared, on average two days before death. Of the 63 patients, 47 had only one uncontrollable symptom, 15 had two symptoms and one patient had three symptoms. The most common symptoms included dyspnea (33 patients), pain (31), delirium (11), and vomiting (5). The most frequent symptoms were dyspnea in lung and head and neck disease; pain in breast, gastrointestinal tract, colon-rectum, and male genitourinary tract cancer; and vomiting in female genitourinary tract malignancies. Data reported emphasize the clinical relevance of physical symptoms in the last days of life in terminal cancer patients and how these serve to indicate imminent death. More than 50% of these patients die with physical suffering that is controllable only by means of sedation.
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- 1990
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22. Eliciting individual preferences about death: development of the End-of-Life Preferences Interview
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Laura Piva, Claudia Borreani, Massimo Piazza, Cinzia Brunelli, Marcello Tamburini, Piero Morino, and Guido Miccinesi
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Male ,medicine.medical_specialty ,Palliative care ,Attitude to Death ,Internationality ,Decision Making ,MEDLINE ,Compliance (psychology) ,Right to die ,Interviews as Topic ,Patient satisfaction ,Informed consent ,Medicine ,Humans ,General Nursing ,Final version ,Terminal Care ,Informed Consent ,business.industry ,Palliative Care ,Right to Die ,Preference ,Anesthesiology and Pain Medicine ,Italy ,Patient Satisfaction ,Family medicine ,Female ,Neurology (clinical) ,business ,Social psychology - Abstract
The capability to make decisions about one's own dying and death is commonly considered a necessary component of a good death, but difficulties in communicating about imminent death have been documented. This paper attempts to describe the process of constructing an instrument to elicit individual preferences concerning dying, while respecting the patient's awareness, and to verify its applicability in a palliative care setting. The development of the End-of-Life Preferences Interview (ELPI) was performed through (a) a literature search aimed at identifying relevant issues; (b) examination by a panel of experts in the field of palliative care of the items generated; and (c) pretesting of feasibility on all eligible consecutive patients referred to three centers of palliative care during a two-month period. The final version of the ELPI consisted of two parts: The first level explores preferences about issues regarding the caregiving process, and the second level focuses on preparation for death. Each of the two parts is introduced by key questions aimed at allowing the patient to decide whether and when to stop exploring such sensitive matters. Among the 49 eligible patients (41%), the interview was proposed to only 13 of them (27%), and only one of them refused. The reasons for such a low compliance of physicians in proposing the ELPI were evaluated by a semi-structured interview and are herein discussed. The use of the ELPI in clinical practice can favor the passage to a greater consideration of the self-determination of the patient at the end of life, with due consideration of his or her cultural and emotional needs.
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- 2007
23. A Wireless Health Outcomes Monitoring System (WHOMS): development and field testing with cancer patients using mobile phones
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Micaela Lina, Marcello Tamburini, Fabio Carminati, Cinzia Brunelli, Stella La Capra, and Emilia Bielli
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Male ,Quality Assurance, Health Care ,State of health ,Health Informatics ,Telehealth ,lcsh:Computer applications to medicine. Medical informatics ,Health informatics ,Quality of life (healthcare) ,Nursing ,Intervention (counseling) ,Neoplasms ,Surveys and Questionnaires ,Outcome Assessment, Health Care ,Medicine ,Humans ,business.industry ,Health Policy ,Middle Aged ,medicine.disease ,Computer Science Applications ,Test (assessment) ,Technical Advance ,Mobile phone ,Quality of Life ,lcsh:R858-859.7 ,The Internet ,Female ,Medical emergency ,Patient Participation ,business ,Cell Phone - Abstract
Background Health-Related Quality of Life assessment is widely used in clinical research, but rarely in clinical practice. Barriers including practical difficulties administering printed questionnaires have limited their use. Telehealth technology could reduce these barriers and encourage better doctor-patient interaction regarding patient symptoms and quality-of-life monitoring. The aim of this study was to develop a new system for transmitting patients' self-reported outcomes using mobile phones or the internet, and to test whether patients can and will use the system via a mobile phone. Methods We have developed a prototype of a Wireless Health Outcomes Monitoring System, which allows structured questionnaires to be sent to the patient by their medical management team. The patients' answers are directly sent to an authorised website immediately accessible by the medical team, and are displayed in a graphic format that highlights the patient's state of health. In the present study, 97 cancer inpatients were asked to complete a ten-item questionnaire. The questionnaire was delivered by display on a mobile phone, and was answered by the patients using the mobile phone keypad. Results Of the 97 patients, 56 (58%) attempted the questionnaire, and all of these 56 completed it. Only 6% of the total number of questions were left unanswered by patients. Forty-one (42%) patients refused to participate, mostly due to their lack of familiarity with mobile phone use. Compared with those who completed the questionnaire, patients who refused to participate were older, had fewer years of education and were less familiar with new communications technology (mobile phone calls, mobile phone SMS, internet, email). Conclusion More than half of the patients self-completed the questionnaire using the mobile phone. This proportion may increase with the use of multichannel communications which can be incorporated into the system. The proportion may also increase if the patient's partner and/or family were able to assist the patient with using the technology. These preliminary results encourage further studies to identify specific diseases or circumstances where this system could be useful in patients' distance monitoring. Such a system is likely to detect patient suffering earlier, and to activate a well-timed intervention.
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- 2004
24. Candidates for liver transplantation for cancer: physical, psychological, and social conditions
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Laura, Gangeri, Marcello, Tamburini, Claudia, Borreani, Cinzia, Brunelli, Guido, Miccinesi, Luciana, Murru, Paolo, Boeri, and Vincenzo, Mazzaferro
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Employment ,Male ,Patient Selection ,Emotions ,Liver Neoplasms ,Middle Aged ,Personality Disorders ,Liver Transplantation ,Interviews as Topic ,Cognition ,Socioeconomic Factors ,Patient Satisfaction ,Surveys and Questionnaires ,Prevalence ,Quality of Life ,Humans ,Female ,Attitude to Health - Abstract
There is little knowledge of the psychological and social conditions of candidates for liver transplantation and the meaning that these patients attribute to those conditions.The research has been conducted with quantitative and qualitative methods. For the quantitative study, 80 patients were assessed with four evaluation instruments: the Interdisciplinary Group for Cancer Care Evaluation in Italy (GIVIO) questionnaire for quality of life, the Needs Evaluation Questionnaire (NEQ) for psychosocial needs, the Minnesota Multiphasic Personality Inventory (MMPI) personality test, and a questionnaire for the family's reactions to the illness. The qualitative evaluation was conducted to better understand the meaning of the transplantation as expressed by the patients, the integration of the new organ, and the symbolic relationship with the donor with particular attention to the different levels of patients' awareness.The quantitative evaluation showed a good level of quality of life assessed by GIVIO and a low prevalence in the personality disorder scales detected by the MMPI. The patients' needs assessed by NEQ showed a high need of information about the future conditions (77%) followed by the need for more explanation of examinations (49%) and treatments (50%). The qualitative study identified and analyzed two opposite groups of five patients each: those who did not recognize and did not express any emotional experience and those who recognized and expressed a particularly intense emotional experience.The psychosocial condition of transplant candidates with liver cancer is characterized by an impact that is more psychological than physical. The qualitative analysis performed allows the hypothesis that the patient's level of awareness is an important indicator to predict the type of adaptation after transplantation.
- Published
- 2002
25. Quality of life assessment and outcome of palliative care
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Guido Miccinesi, Carlo Peruselli, Massimo Constantini, Marcello Tamburini, Cinzia Brunelli, Julia Addington-Hall, Irene J Higginson, Franco Toscani, Paola Di Giulio, Michele Gallucci, and Eugenio Paci
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Male ,medicine.medical_specialty ,Palliative care ,Outcome (game theory) ,Quality of life ,Nursing ,Surveys and Questionnaires ,medicine ,Humans ,General Nursing ,Aged ,business.industry ,Palliative Care ,Advanced stage ,Middle Aged ,humanities ,Patient population ,Treatment Outcome ,Anesthesiology and Pain Medicine ,Clinical research ,Quality of Life ,National study ,Physical therapy ,Female ,Neurology (clinical) ,business ,Median survival - Abstract
Quality of life (QoL) assessment is crucial for the evaluation of palliative care outcome. In this paper, our methodological approach was based on the creation of summary measures. Fifty-eight Palliative Care Units (PCUs) in Italy participated in the study. Each PCU randomly selected patients to be ‘evaluated’ among the consecutively ‘registered’ patients. At baseline (first visit) and each week the patient was asked to fill in a QoL questionnaire, the Therapy Impact Questionnaire (TIQ). Short-survivors (
- Published
- 2001
26. Assessment of hospitalised cancer patients' needs by the Needs Evaluation Questionnaire
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E. Beltrami, Cinzia Brunelli, Laura Gangeri, Luciana Murru, Guido Miccinesi, Margherita Greco, Claudia Borreani, Patrizia Trimigno, C. Fusco Karmann, Marcello Tamburini, and Paolo Boeri
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Male ,medicine.medical_specialty ,Medical staff ,State of health ,Health Status ,Disease ,Internal consistency ,Neoplasms ,Surveys and Questionnaires ,Health care ,medicine ,Humans ,Inpatients ,business.industry ,Construct validity ,Cancer ,Reproducibility of Results ,Hematology ,Middle Aged ,medicine.disease ,Oncology ,Family medicine ,Needs assessment ,Physical therapy ,Female ,business ,Needs Assessment - Abstract
Summary Background: Cancer disease modifies the order and the nature of needs connected with the state of health. The aim of this study was to evaluate the informative, psychological, social and practical needs of hospitalised cancer patients by means of the Needs Evaluation Questionnaire (NEQ), an instrument designed concisely for the convenience of patients and medical staff. Patients and methods: Different samples of consecutive hospitalised cancer patients were involved in the various phases of designing the instrument: 30 patients for items identification, 101 patients for completeness and acceptability evaluation, 423 patients for construct validity and prevalence of needs; content and reliability analysis were performed on 2 subsamples of, respectively, 60 and 88 of the patients from the last sample. Results: The validation analysis showed rather good reliability, structure validity and internal consistency of the questionnaire. The prevalence analysis showed that the most common needs were: 'more information about my future conditions' (74%); 'more information about my diagnosis' (56%); 'more information about the exams I am undergoing' (52%); 'more explanations on treatments' (51%); 'to have a better dialogue with clinicians' (57%); 'better services from the hospital' (bathrooms, meals, cleaning) (56%). Conclusions: The NEQ, self-completed by patients, has proven to be a useful clinical tool for obtaining a systematic and undistorted overview of the principal needs with respect to the state of health of patients. This instrument, which can also be administered by persons not belonging to the health care system such as volunteers, and inserted into the patients' hospital charts, could be used by the medical staff to identify the real needs of patients at an early stage.
- Published
- 2000
27. Révision des résultats du traitement antalgique par la morphine orale vis-à-vis de différentes pathologies oncologiques
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S. Milani, L. Barletta, Carla Ripamonti, Vittorio Ventafridda, Marcello Tamburini, and F. De Conno
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Gynecology ,medicine.medical_specialty ,Anesthesiology and Pain Medicine ,business.industry ,medicine ,business - Abstract
Une etude retrospective a ete effectuee chez 1048 malades souffrant de douleurs dues a un cancer avance et ayant recu au moins trois semaines de traitement de morphine HCI per os.
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- 1990
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28. Home palliative care for terminal cancer patients: a survey on the final week of life
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Guido Miccinesi, Massimo Costantini, Carlo Peruselli, Marcello Tamburini, Eugenio Paci, Cinzia Brunelli, P. Di Giulio, F. Toscani, Marcello Gallucci, Irene J Higginson, and Julia Addington-Hall
- Subjects
Adult ,Male ,Pediatrics ,medicine.medical_specialty ,Palliative care ,Sedation ,Terminal cancer ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,030502 gerontology ,Neoplasms ,medicine ,Terminal care ,Humans ,Hypnotics and Sedatives ,Team assessment ,Aged ,Aged, 80 and over ,Terminal Care ,business.industry ,Palliative Care ,General Medicine ,Middle Aged ,Home Care Services ,Death ,Anesthesiology and Pain Medicine ,Multicenter study ,Italy ,030220 oncology & carcinogenesis ,Health Care Surveys ,Quality of Life ,Intractable pain ,Female ,medicine.symptom ,Analgesia ,0305 other medical science ,business - Abstract
As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and ‘quality of death’ of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluation). Of these 401 patients 303 (76%) died at home. According to the Support Team Assessment Schedule (STAS) pain was fairly well controlled during the final week of life, while the control of other symptoms appeared to be less satisfactory. Invasive procedures were undertaken on 56% of patients, while in hospital the percentage increased to 75%. Twenty-five per cent of patients were totally pharmacologically sedated during the final 12 h of life. Neither the number of symptoms nor other factors were apparently associated with the decision to sedate the patient. The wide variations in the frequency of sedation among centres suggest that the choice to sedate the patient may reflect the provider's behaviour or services' policy rather than the patients' preference or needs. The definition of common criteria and guidelines for sedation of patients should be one of the topics for discussion among palliative care teams.
- Published
- 1999
29. Quality of life in brain tumor patients
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Amerigo Boiardi, Anna Rita Giovagnoli, and Marcello Tamburini
- Subjects
Oncology ,Adult ,Male ,Cancer Research ,medicine.medical_specialty ,Activities of daily living ,Statistics as Topic ,Brain tumor ,Anxiety ,Neuropsychological Tests ,Quality of life ,Internal medicine ,Medicine ,Humans ,Psychological testing ,Psychiatry ,Neoplasm Staging ,Analysis of Variance ,business.industry ,Brain Neoplasms ,Neuropsychology ,Cognition ,Middle Aged ,medicine.disease ,Combined Modality Therapy ,Neurology ,Case-Control Studies ,Quality of Life ,Regression Analysis ,Female ,Neurology (clinical) ,medicine.symptom ,business ,Psychosocial - Abstract
With the aim of evaluating the quality of life (QL) of 101 brain tumor patients, a multidimensional approach was adopted, using the Functional Living Index - Cancer (FLIC) as a global measure of well-being, the Karnofsky Performance Scale (KPS) and the Index of Independence in Activity of Daily Living (ADL) as indices of physical and functional dimensions, the State-Trait Anxiety Inventory (STAI) and the Self-Rating Depression Scale (SRDS) for psychological assessment, and neuropsychological tests for abstract reasoning, attention, memory and frontal lobe functions. The patients were grouped on the grounds of disease stage and treatment The FLIC and KPS ratings increased from the patients who had just undergone surgery to patients who were disease-free after completing chemotherapy and radiotherapy, thus showing that the QL may improve during the disease despite aggressive treatments, providing there is no tumor recurrence. However, only the FLIC consistently discriminated the patients' stratification. The ADL revealed no between-group differences, whereas the STAI and SRDS revealed the presence of emotional troubles at the beginning and at the end of treatment. Cognitive impairment was more serious after radiotherapy and chemotherapy, as well as in patients with tumor recurrence. The FLIC significantly correlated with all of the other scales used, showing that it is useful in summarizing both the physical and psychosocial impairment of brain tumor patients. Of the pathological variables, a tumor location in the anterior right hemisphere or diencephalon was associated with high FLIC ratings, may be due to the minor cognitive impairment observed in patients with these tumor sites. Of the demographic variables, the level of education was associated with high FLIC ratings, thus highlighting the role of psychosocial environment in improving the QL. The use of a multidimensional approach or a global index of well-being that also reflects psychosocial and cognitive aspects proved to be more appropriate than traditional functional instruments (such as the KPS) in assessing the QL of brain tumor patients and in detecting the extent of the disease.
- Published
- 1996
30. Effect of home care on the place of death of advanced cancer patients
- Author
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Cinzia Brunelli, Ilaria Donati, L Groff, A. Caraceni, Marcello Tamburini, Vittorio Ventafridda, and F. De Conno
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Gerontology ,Male ,Cancer Research ,medicine.medical_specialty ,Palliative care ,Family support ,Population ,Quality of life (healthcare) ,Neoplasms ,Medicine ,Humans ,Debility ,Prospective Studies ,education ,Prospective cohort study ,Aged ,education.field_of_study ,Terminal Care ,business.industry ,Palliative Care ,Middle Aged ,medicine.disease ,Home Care Services ,Hospitalization ,Oncology ,Italy ,Socioeconomic Factors ,Family medicine ,Female ,business ,Cancer pain ,Psychosocial - Abstract
This study presents a prospective evaluation of the home care programme for patients with advanced cancer at the National Cancer Institute of Milan. Demographic, psychosocial and physical variables were evaluated. The Therapy Impact Questionnaire was used for symptom and quality of life assessment. The association of clinical and demographic variables with the place of death was investigated, considering that the aim of the home care programme is to follow up patients until death in their houses. Eighty-six per cent (86%) of patients died at home and 14% in hospitals. Multivariate analysis showed that only a higher degree of family support was associated with home death. Several changes in symptoms and quality of life items scores were seen, pain improved while physical debility and cognitive functions worsened throughout the home care duration to death. High intensity pain and dyspnoea were still present in, respectively, 23.8 and 15.3% of patients in the last week of life. Psychological distress was high at the end of life and did not seem to be affected by treatment. Home care is a feasible alternative for implementing palliative care in a selected population of patients with advanced cancer. Palliation of physical symptoms is more easily achieved than the control of psychological suffering. Family and economical issues implied by home care models should be part of the discussion in implementing palliative care for advanced cancer patients.
- Published
- 1996
31. Prognostic value of quality of life scores in terminal cancer patients
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Marcello Tamburini, Vittorio Ventafridda, Stefano Rosso, and Ciozia Brunelli
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Gerontology ,Male ,medicine.medical_specialty ,Weakness ,Palliative care ,Cross-sectional study ,Quality of life ,Internal medicine ,Neoplasms ,Medicine ,Humans ,General Nursing ,Survival analysis ,Aged ,Proportional Hazards Models ,Proportional hazards model ,business.industry ,Confounding ,Palliative Care ,Middle Aged ,Prognosis ,Survival Analysis ,Middle age ,Anesthesiology and Pain Medicine ,Cross-Sectional Studies ,Quality of Life ,Female ,Neurology (clinical) ,medicine.symptom ,business - Abstract
A multicenter cross-sectional study of 115 terminal cancer patients in eight home-care units assessed the prognostic value of quality of life scores, as measured by the Therapy Impact Questionnaire (TIQ). The analysis of the questionnaires completed by 100 patients revealed an association between survival and many of the scales: fatigue, gastrointestinal symptoms, global health status, functional impairment, emotional status, and cognitive status. This association was also observed for some specific physical symptoms, such as confusion, weakness, and loss of appetite, and the overall number of symptoms reported by the patient. Adjusting for some possible confounding factors, only confusion (among the physical symptoms), cognitive status, and global health status (among TIQ primary scales) showed independent prognostic value. As regards the latter two scales, median survival time was distributed differently for patients with no impairment of either (137 days), with impairment of one scale (50 days) and with impairment of both scales (17 days). The judgment expressed by the patient about subjective perception of general malaise and cognitive difficulties can give the clinician important prognostic information.
- Published
- 1996
32. The patient's perception of his own quality of life might have an adjunctive prognostic significance in lung cancer
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G.F. Buccheri, Domenico Ferrigno, Cinzia Brunelli, and Marcello Tamburini
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Pulmonary and Respiratory Medicine ,Adult ,Male ,Cancer Research ,medicine.medical_specialty ,Lung Neoplasms ,Disease ,Weight loss ,Risk Factors ,Internal medicine ,Surveys and Questionnaires ,medicine ,Humans ,Lung cancer ,Aged ,Retrospective Studies ,Performance status ,business.industry ,Univariate ,Cancer ,Cognition ,Middle Aged ,medicine.disease ,Prognosis ,Survival Rate ,Oncology ,Concomitant ,Data Interpretation, Statistical ,Physical therapy ,Quality of Life ,Female ,medicine.symptom ,business ,Follow-Up Studies - Abstract
Only 5–10% of patients with lung cancer (LC) can be expected to be cured by radical treatments. In the remaining subjects the potential survival benefit of treatment must be weighed, taking into consideration the possible deterioration of quality of life (QL). Indeed, studies dealing with different aspects of QL are being increasingly reported in LC. In a few of them, the interesting observation was made that the patient-rated QL correlated well with the subsequent clinical outcome. In the present study we analyse 11 items of the Therapy Impact Questionnaire (a new instrument of QL), assessing both disease and therapy impact on physical condition, functional status, concomitant emotional and cognitive factors and social interactions. Questionnaires were completed by 128 consecutive LC patients, who had been seen, in the years 1990 through 1993, either for a newly diagnosed cancer (40 patients), or after a successful operation (15 patients), or during active and/or symptomatic treatment (73 patients). At the time of the QL assessment, a minimal set of demographic and clinical variables was recorded. Univariate tests of survival showed that stage of disease, difficulty at work or doing the housework, weight loss, performance status, difficulty relaxing, having been felt unsure, and tumor cell type were all associated, in decreasing order of significance, with prognosis. QL variables correlated well with each other, but poorly with clinical and demographic variables (an expected exception was the good correlation existing between working capacity/physical autonomy and the corresponding observer evaluation of performance status). This lack of correlations explains how QL variables maintained their significance in multivariate survival analyses. In the best multivariate model, the self-estimated difficulty at work or doing the housework followed the stage of disease, but preceded weight loss as a significant, independent, prognostic determinant. Further studies evaluating several other additional prognostic indicators are needed to better clarify the relative prognostic importance of quality of life.
- Published
- 1995
33. Volunteers in hospital and home care: a precious resource
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Marcello Tamburini and Claude Fusco-Karmann
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Adult ,Male ,Volunteers ,Cancer Research ,Palliative care ,Home Nursing ,MEDLINE ,050109 social psychology ,Hospital Volunteers ,03 medical and health sciences ,Nursing ,030502 gerontology ,Intervention (counseling) ,Neoplasms ,Medicine ,Humans ,0501 psychology and cognitive sciences ,Volunteer ,Aged ,business.industry ,05 social sciences ,Professional development ,General Medicine ,Middle Aged ,Mood ,Oncology ,Italy ,Workforce ,Female ,Apprenticeship ,0305 other medical science ,business - Abstract
Aims and background Ten years ago, a program o intervention by volunteers in cancer hospitals and at home was started. Home care is accomplished by teams of palliative care givers, in which volunteers are included. After a selective interview, all voluntary candidates with the necessary qualifications are trained and specific apprenticeship is done. Hence, their professional training is carried out through regular groups of supervision followed by a psychologist and a coordinator. A study was carried out to evaluate the activity of volunteers, in the hospital and at home, as judged by patients, nurses and the volunteers themselves. Methods On the whole, the data analyzed concerned 216 patients, 163 nurses and 92 volunteers in the hospital and 30 patients, 16 nurses and 35 volunteers at home. The questionnaires used for the study had four possible answers (no, a little, much, very much) or required an answer on a scale of 0 to 10. Results A high quota of patients gave a very positive opinion (“much” or “very much”) on the importance of the presence of volunteers in the hospital (76%) and at home (90%). In the second case, volunteers were particularly useful to improve a patient's mood (80%) and to solve practical problems (47%). General agreement was noted among nurses and volunteers on the activity of the latter. The main form of intervention of all volunteers is to give psychosocial support to patients. A score of 7 to 10 was given to this item by 60% of the nurses and by 82% of the hospital volunteers. At home, respectively 80% and 89% gave such a score for the same item. Other activities of the volunteer were support for the family, assistance in social activities, and to give information. Conclusions The presence of the volunteer in the hospital and at home appears to be helpful to the patient and the family by becoming part of the team without becoming involved directly in its clinical activity.
- Published
- 1994
34. What do Italian hospital physicians know about quality of life assessment in oncology?
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Marcello Tamburini, Gianfranco Belli, and Eugenio Paci
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Oncology ,Adult ,Cancer Research ,medicine.medical_specialty ,Health Knowledge, Attitudes, Practice ,Visual analogue scale ,Hospital Departments ,Assessment instrument ,Disease ,Medical Oncology ,Patient care ,030218 nuclear medicine & medical imaging ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,Internal medicine ,Neoplasms ,Medical Staff, Hospital ,Medicine ,Humans ,Group performance ,Aged ,Karnofsky Performance Status ,business.industry ,General Medicine ,Middle Aged ,Italy ,030220 oncology & carcinogenesis ,Family medicine ,Scale (social sciences) ,Quality of Life ,business - Abstract
Aims To assess the current level of information and use of quality of life assessment instruments by Italian physicians involved in oncologic patient care. Methods Specifically trained scientific representatives of a pharmaceutical company interviewed 2237 hospital physicians all over Italy. Results A total of 1390 physicians (62.1%) had some knowledge of quality of life assessment tools in oncology, but 364 of them (26.2%) were unable to recall the name of any instruments. The one that was most frequently recalled by the 1026 physicians who knew of the existence of one or more instruments was the Karnofsky Performance Status (KPS) (91%) followed by the Eastern Cooperative Oncology Group performance scale (ECOG) (35.5%) whereas the Quality of Life Index and Visual Analogue Scale were at the very bottom of the list (5.9% and 3.7%, respectively). Physician age and type of department were found to be strong predictors of knowledge of the instruments, which was greater among young physicians and those working in oncological departments. Of the physicians aware of the KPS, 56.6% used it, whereas the percentage of physicians using ECOG was higher (69.5%). Conclusions The collected data indicate a poor knowledge of quality of life assessment instruments in Italian physicians. Most physicians tend to use so-called «objective» instruments where the assessment is made by the physician and not by the patient (KPS, ECOG Quality of Life index), are practically unaware of the new generation of «subjective» self-rating instruments. The use of such instruments in particular might provide greater insights into the impact of the disease and related treatments on the quality of life of cancer patients.
- Published
- 1994
35. Suicide among patients with cancer cared for at home by palliative-care teams
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Franco De Conno, Amadio Totis, Marcello Tamburini, Carla Ripamonti, and Antonio Filiberti
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Male ,medicine.medical_specialty ,Palliative care ,Population ,Poison control ,Suicide prevention ,Neoplasms ,Injury prevention ,medicine ,Humans ,Terminally Ill ,Risk factor ,education ,Aged ,education.field_of_study ,business.industry ,Public health ,Palliative Care ,Cancer ,General Medicine ,Middle Aged ,medicine.disease ,Suicide ,Italy ,Family medicine ,Physical therapy ,Female ,business - Abstract
Summary Patients with terminal cancer are thought to be at high risk of committing suicide. In a population of 17 964 patients with terminal cancer cared for at home by 12 palliative-care teams, five patients committed suicide. We speculate that continuing care made up by symptomatic treatment and psychosocial support given to these patients may reduce the risk.
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- 1999
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36. Unendurable symptoms as prognostic indicators of impending death in terminal cancer patients
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Carla Ripamonti, Vittorio Ventafridda, Marcello Tamburini, Franco De Conno, and R. Barrie Cassileth
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Oncology ,Male ,medicine.medical_specialty ,Terminal Care ,business.industry ,Terminal cancer ,Prognosis ,Pain, Intractable ,Text mining ,Dyspnea ,Internal medicine ,Neoplasms ,medicine ,Humans ,Female ,Prospective Studies ,business - Published
- 1990
37. [Untitled]
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Mohsen Asadi-Lari, David Gray, and Marcello Tamburini
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Medical education ,medicine.medical_specialty ,business.industry ,Public Health, Environmental and Occupational Health ,Health services research ,General Medicine ,humanities ,Quality of life (healthcare) ,Patient satisfaction ,Family medicine ,Health care ,Needs assessment ,Medicine ,Health education ,Social determinants of health ,business ,Health policy - Abstract
With the publication of its 100th paper, the new open access Journal Health and Quality of Life Outcomes (HQLO), achieves a significant milestone. Launching a journal in this field was not just a challenge with respect to nomenclature, [1] but also provided a forum for disseminating research which emphasises the unique contributions as well as the inter-relationships among determinants of health, provision of care, and outcomes. So far, prominence (as measured by the number of scientific manuscripts accepted for publication) has been given mainly to the unique contributions of health-related quality of life (HRQL). Other determinants like health needs and satisfaction have sporadically been considered [2-7]. A few additional papers have focused on approaches to detect ill health. In this editorial we would like to explore the relationship between needs, satisfaction and quality of life, identify gaps in the current knowledge base, and encourage future research in these areas.
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- 2004
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38. [Untitled]
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Clare Bradley and Marcello Tamburini
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medicine.medical_specialty ,Palliative care ,media_common.quotation_subject ,Public Health, Environmental and Occupational Health ,General Medicine ,Quality of life (healthcare) ,Patient satisfaction ,Nursing ,Work (electrical) ,Well-being ,medicine ,Quality (business) ,Meaning (existential) ,Outcomes research ,Psychology ,Social psychology ,media_common - Abstract
In the course of eliciting feedback on possible titles for this new journal the comments revealed a fascinating range of views on the terminology commonly used and abused in the literature. We describe here some highlights of the exploration on the meaning and the implication of the words that led to the title chosen after much deliberation. The working title used by the Editor, Marcello Tamburini, during the early planing stages of this journal was 'Quality of Life Outcomes'. When he issued invitations to join the Editorial Board, Clare Bradley replied that there was indeed scope for the kind of journal described and welcomed the initiative but expressed concern about the title as follows: "I think the use of the term 'quality of life' in the title of the journal Quality of Life Research' has contributed to the confusion about the measures described within the journal. Health status measures are often referred to as quality of life measures when they are actually measuring quality of health not quality of life. There are very important differences between the two and when those differences are not recognised it can lead to erroneous conclusions. I attach a commentary that was published last year in The Lancet where I discuss these issues [1]. "I hope you will understand why I would not want to have a journal called 'Quality of Life Outcomes' that then included papers on health status measures, patient satisfaction etc. Having said that, I think that health status and satisfaction measures are important too and I would like to see more outlets for publishing such material. Thus, rather than narrow down the content to fit the title of 'Quality of Life Outcomes', I would prefer to broaden the title to include all such measures. 'Patient Reported Outcomes' is becoming the new well-recognised phrase in this field and this might make a good title for a journal. What do you think?" The Lancet commentary attached gave the example of the UK Prospective Diabetes Study [2] as one of many that has erroneously used a health status measure, in this case the EQ-5D (also known as the EuroQoL), as if it were a measure of quality of life. When no differences were found between EQ-5D scores of participants with Type 2 diabetes who were more intensively treated on insulin and scores of those treated less intensively with oral hypoglycaemic agents or diet alone, the UKPDS researchers concluded that the therapies were neutral in their effect on quality of life [3]. Clare Bradley pointed out that given the nature of the EQ-5D health status measure, in fact what had been shown was that the therapies had no differential effect on perceived health which is a very different matter. Perhaps surprisingly, more intensive treatment didn't make these patients feel any healthier. We don't know what it did to their quality of life because it wasn't measured. The problem of misinterpreting health status measures as if they were measuring quality of life continues and is not restricted to the EQ-5D. Speight has recently critiqued one of the many papers that wrongly describes the SF-36 as a measure of quality of life [4]. Marcello Tamburini circulated Clare Bradley's letter and attachment to 21 Editorial Board members when asking which of four possible titles they preferred and why. The four options offered were: 1. Quality of Life Outcomes 2. Health and Quality of Life Outcomes 3. Health-related Quality of Life Outcomes 4. Patient Reported Outcomes The 16 immediate replies narrowed down the choice to options 2 and 4. A ballot was then taken among 63 experts in the field (most of them editorial board members of the new Journal). They were sent an extract from information presented as background to a symposium (May 19 2002) on Patient-Reported Outcomes to be held by the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) (Table (Table1).1). The results of the ballot were as follows: Table 1 Background – PATIENT-REPORTED OUTCOMES 'PRO' SYMPOSIUM CONCEPTUAL AND METHODOLOGICAL ISSUES – International Society for Pharmacoeconomics and Outcomes Research Preferences and Number of Votes • Missing 10 • No preference 2 • Preferred 'Health and Quality of Life Outcomes' 33 • Preferred 'Patient Reported Outcomes' 18 Reasons for preference were requested along with votes and those reasons are interesting (Table (Table2).2). It appeared to be accepted that 'patient reported outcomes' would cover the intended subject matter of the journal fairly well. However, there was one notable exception – we may not wish to restrict coverage to the reports of patients but may also wish to publish work that includes reports of family members and carers, and reports of people at risk of health problems who are not currently patients. However, as Deborah Lubeck pointed out 'Some quality of life studies still include instruments that are really physician completed symptom checklists that are not patient reported'. It would be an advantage to have a title that encouraged use of patient reports. Health and Quality of Life Outcomes had its own limitations concerning coverage. It would cover health status, symptoms, and, perhaps, well being under the 'health' label as well as quality of life measures under their own banner, and these could include reports by non-patients as well as by patients. However, it seemed that certain outcomes were excluded, in particular measures of satisfaction, and this was not intended. Patient Reported Outcomes was a broader term in this respect and could include patient satisfaction. Dorothy Keininger suggested that Patient Reported Outcomes might embrace articles on utilisation and economic data and asked if the journal intended to publish such articles (it does) and she was not alone in raising this question. Thus there was concern that Patient Reported Outcomes might be too narrow in excluding non-patient community surveys, carer's reports and chart audits. Table 2 Comments on the title of the new journal It was widely recognised that 'patient reported outcomes' was a new term and would be unfamiliar to many potential readers of this new journal. The novelty was greeted with caution by some and enthusiasm by others. There was concern that the term was 'somewhat obscure' although 'becoming better recognised' and that it was 'too cryptic' while Health and Quality of Life Outcomes was more 'self-explanatory and descriptive'. Dorothy Keininger suggested that patient reported outcomes may not be understood 'outside of the circle of researchers who follow ISPOR and the FDA' (Federal Drugs Administration). In contrast there was some suggestion that 'Maybe Patient Reported Outcomes will become the new buzz word that quality of life was...' (Anne Coscarelli), and that 'Here is a chance to be on the cutting edge of a new way of thinking about outcomes that puts the patient's view first' (Carol Buckhardt). Franco Toscani expressed a clear preference for Patient Reported Outcomes, commenting 'do you remember the term "palliative care"? When we started using it, it looked a strange, unusual, peculiar term, and many colleagues suggested rather "continuing care". History always prizes the new and difficult, not the old and comfortable. If you need work and application for making Patient Reported Outcomes understandable, clear and accepted, well, this is part of the fun!' Catherine Acquadro was equally confident of her preference for Patient Reported Outcomes (PRO) Journal. 'As Clare tells so aptly, PRO has a broader scope, and will include HRQL (Health Related Quality of Life) as well as satisfaction with treatment, health status measures, global impression, well-being etc. Moreover the term PRO is widely accepted by regulators especially by the FDA'. Marcello Tamburini declared himself to be 'lacerate' between the two titles, welcoming the familiarity of Health and Quality of Life and the word 'patient' in Patient Reported Outcomes. He observed that 'patient' occurs in the titles of only 17 of 4,600 biomedical journals included in Medline. A downside of Patient Reported Outcomes is that the term 'patient' has unfortunate and inappropriate connotations of passivity that Clare Bradley would rather avoid although others have restricted their concern to the fact that a focus on patients excludes other groups of interest. The term does, however, have advantages over the old chestnut 'subjective outcomes', the reverse of which was the much-prized 'objective outcomes' (also known as 'hard outcomes') against which 'subjective outcomes' (or 'soft outcomes') came a poor second in the typical medical mind if not the psychological one. Finally, as pointed out by John Ware in his response to the ballot, 'A noteworthy strength of 'Health and Quality of Life Outcomes' is that it recognises the crucial distinction between health and quality of life'. The majority of the Editorial Board members expressed a preference for Health and Quality of Life Outcomes. The outcomes referred to here are more specific than those encompassed by 'patient reported outcomes' and the title does not specify some outcomes that we may go on to include in the journal, such as patient satisfaction. This title has the advantage of familiarity but also makes the crucial distinction between two of the most important goals attainable – health and quality of life.
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- 2003
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39. The psychological acceptability of follow up in a group of sarcoma patients
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L Gangeri, Paolo G. Casali, E Mencaglia, Marcello Tamburini, Armando Santoro, A Filiberti, and Rossella Bertulli
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Cancer Research ,medicine.medical_specialty ,Oncology ,business.industry ,Group (periodic table) ,Internal medicine ,Medicine ,Sarcoma ,business ,medicine.disease - Published
- 1993
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40. Survival correlates of ratings of psycho-physical well-being in lung cancer (LC)
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G.F. Buccheri, Domenico Ferrigno, C. Brune, and Marcello Tamburini
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Oncology ,Cancer Research ,medicine.medical_specialty ,business.industry ,Internal medicine ,Medicine ,Physical well being ,business ,Lung cancer ,medicine.disease - Published
- 1993
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41. Psychologic Aspects of Patients Participating in a Phase I Study with the Synthetic Retinoid 4-Hydroxyphenyl Retinamide
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Tiziana Campa, Antonio Filiberti, Alberto Costa, Giovanni Dossena, Maria Antonietta Pizzichetta, Andrea Magni, Marcello Tamburini, Fiamma Buranelli, C. Andreoli, and Vittorio Ventafridda
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Adult ,Cancer Research ,medicine.medical_specialty ,Fenretinide ,Sexual Behavior ,medicine.medical_treatment ,Breast Neoplasms ,Tretinoin ,Anxiety ,030218 nuclear medicine & medical imaging ,Random Allocation ,03 medical and health sciences ,0302 clinical medicine ,Breast cancer ,Internal medicine ,Adaptation, Psychological ,medicine ,Adjuvant therapy ,Humans ,Depression (differential diagnoses) ,Chemotherapy ,Depression ,business.industry ,Cancer ,General Medicine ,Middle Aged ,medicine.disease ,Surgery ,Affect ,Mood ,Oncology ,030220 oncology & carcinogenesis ,Drug Evaluation ,Female ,Hormone therapy ,medicine.symptom ,business - Abstract
One hundred and one patients participating in a phase I study with the synthetic retinoid 4-HPR (4-hydroxyphenyl retinamide) were evaluated. The study was set up by Veronesi et al. during 1986 at the National Cancer Institute of Milan. The patients were randomized into 4 groups. of therapy: 25 in the placebo group, 25 in the group receiving a daily dose of 100 mg of HPR, 26 in the group receiving 200 nig/day of HPR, and 25 in the group receiving 300 mg/day of HPR. All patients were previously treated at our Institute for breast cancer. None had received adjuvant therapy, chemotherapy or hormone therapy. After 4–5 months from the beginning of treatment, all patients received a series of tests to evaluate anxiety, depression and sexual life. Moreover, during one the follow-up checkups after 4–5 months, the patients filled-out a self-scoring mood questionnaire. The results did not show any particular differences between the groups, although we found that the administered drug and experimental setting do not interfere with the psychologic state of the participating patients.
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- 1988
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42. Quality of Life and Psychological State after Radical Vulvectomy
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Vittorio Ventafridda, Giuseppe De Palo, Antonio Filiberti, and Marcello Tamburini
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Psychotherapist ,media_common.quotation_subject ,Obstetrics and Gynecology ,Context (language use) ,Human sexuality ,Psychiatry and Mental health ,Clinical Psychology ,Reproductive Medicine ,Minnesota Multiphasic Personality Inventory ,Quality of life ,Radical Vulvectomy ,Personality ,Psychology ,Psychosocial ,Depression (differential diagnoses) ,Clinical psychology ,media_common - Abstract
The aim of the present paper was to evaluate retrospectively the quality of life in a group of women treated with radical vulvectomy with or without lymphadenectomy for vulvar neoplasia.The series consists of 21 patients under age 61 evaluated from 6 months to more than 5 years after surgery. Structured questionnaires were used to obtain information relating to work activity, emotional adjustment and the sexual relationship with the partner. All patients also completed the Minnesota Multiphasic Personality Inventory (MMPI). Analyses indicated a decrease in adjustment for the emotional relationship in 41% of the subjects, in 38% of the subjects for working activity, and among 76% of the subjects for sexual activity. The MMPI results showed high values for the 3 ‘neurotic’ scales (hysteria, hypochondria, depression), with only slight elevations for the ‘psychotic’ scales. These data are discussed in the context of previous research on the psychosocial and sexual outcomes following gynecologic cancer treatment.
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- 1986
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43. Semantic descriptors of pain
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Silvana Selmi, Marcello Tamburini, Franco De Conno, and Vittorio Ventafridda
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Male ,medicine.medical_specialty ,Psychometrics ,Performance status ,Visual analogue scale ,Pain ,Test validity ,Middle Aged ,Advanced cancer ,Semantics ,Developmental psychology ,Integrated Pain Score ,Anesthesiology and Pain Medicine ,Neurology ,Neoplasms ,Concomitant ,Physical therapy ,medicine ,Humans ,Female ,Neurology (clinical) ,Cancer pain ,Psychology ,Pain Measurement - Abstract
Eighty-five patients suffering from advanced cancer pain were asked to attribute a 'definite value' to 5 key words describing pain by rating them on a visual analogue scale (VAS). The score which the patient attributed to each key word was then correlated with 9 variables obtained through patient monitoring files (sex, age, educational background, financial situation, integrated pain score, number of concomitant symptoms, hours of sleep and standing, performance status). The visual analogue rating of pain description was not related to the variables examined. However, important correlations were found: the higher the degree of pain, the higher the concomitant symptoms, and the greater reduction in hours of sleep and standing.
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- 1987
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44. Influence of One- and Two-Stage Biopsy-Mastectomy Procedures on Psychologic Adaptation of Patients
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Ettore Cunietti, Salvatore Catania, Massimo Monti, Daniela La Grasta, Elisa Locatelli, and Marcello Tamburini
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Adult ,Cancer Research ,medicine.medical_specialty ,Time Factors ,Biopsy ,medicine.medical_treatment ,Breast Neoplasms ,Anxiety ,Truth Disclosure ,Adaptation, Psychological ,Body Image ,medicine ,Humans ,Hypnotics and Sedatives ,Local anesthesia ,Stage (cooking) ,Mastectomy ,Radical mastectomy ,Aged ,Analgesics ,Physician-Patient Relations ,medicine.diagnostic_test ,business.industry ,Cancer ,Surgical wound ,General Medicine ,Middle Aged ,Patient Acceptance of Health Care ,medicine.disease ,Surgery ,Oncology ,Relative risk ,Female ,business - Abstract
To investigate the psychologic adjustment of women undergoing radical mastectomy for cancer, we compared drug consumption (analgesics and sedatives) in the postoperative period and the time lag between operation and the first spontaneous observation of surgical wound in two groups operated according to different procedures. Group 1 (52 patients; mean age, 47 years) underwent a two-stage surgical treatment consisting of biopsy (local anesthesia) followed after 2-4 h by mastectomy (general anesthesia); in the interval patients were informed about ongoing procedures by the surgeon, who also pronounced some key words such as tumor, malignant disease, cancer. Group 2 (66 patients; mean age, 47 years) underwent biopsy and mastectomy in a single stage under general anesthesia. The relative risk (RR) of Group 1 vs Group 2 patients was calculated as regards both drug consumption and time of the first self-observation of the surgical wound. Our results seem to suggest that the two-stage procedure through special care given by the surgeon may result in a positive coping pattern and thus better acceptance of the mutilation.
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- 1988
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45. Trazodone for deafferentation pain. Comparison with amitriptyline
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Vittorio Ventafridda, A. Caraceni, L. Saita, F. Toscani, G. Ramella, Cesare Bonezzi, F. De Conno, Marcello Tamburini, V. Silvani, and G. Guarise
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Adult ,Amitriptyline ,Analgesic ,law.invention ,Random Allocation ,Double-Blind Method ,Randomized controlled trial ,law ,medicine ,Humans ,Aged ,Pharmacology ,Afferent Pathways ,Clinical Trials as Topic ,business.industry ,Chronic pain ,Trazodone ,Middle Aged ,medicine.disease ,Mood ,Anesthesia ,Neuralgia ,Anxiety ,Antidepressant ,medicine.symptom ,business ,medicine.drug - Abstract
We report a clinical multicentre experience with antidepressant agents (trazodone and amitriptyline) in the treatment of chronic pain due to deafferentation. Forty five patients were admitted to the study; most of them with oncological peripheral nerve lesions. Almost all of them were already being treated with NSAID in association with weak or strong opioids. A random double blind study was performed: 23 patients were treated with trazodone, 22 with amitriptyline. In the assessment of results, pain intensity, hours of sleep, hours standing and lying, side effects, mood, anxiety and weakness were all taken into consideration. The therapeutic analgesic efficacy of the two drugs proved to be similar.
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- 1988
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46. A validation study of the WHO method for cancer pain relief
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Marcello Tamburini, Fulvio Naldi, Vittorio Ventafridda, Franco De Conno, and Augusto Caraceni
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Male ,Narcotics ,Cancer Research ,Validation study ,medicine.medical_treatment ,Analgesic ,Pain ,World Health Organization ,Neoplasms ,Humans ,Medicine ,Aged ,Retrospective Studies ,Analgesics ,Psychotropic Drugs ,Chemotherapy ,Performance status ,business.industry ,WHO method ,Cancer ,Retrospective cohort study ,Middle Aged ,medicine.disease ,Oncology ,Anesthesia ,Female ,business ,Cancer pain - Abstract
The method for cancer pain relief proposed by the World Health Organization (WHO) consists of guidelines for a three-step treatment, from non-opioids to weak and then strong opioids, according to need. Adjuvant drugs can be added to each step. This report presents the 2-year experience of the WHO Collaborating Centre at the National Cancer Institute of Milan in the use of this method. This retrospective study shows that a correct use of the analgesic ladder can reduce pain to a third of its initial intensity. The use of non-opioids had an average duration of 19.2 days; in 52% of the cases treatment was discontinued due to inefficacy and in 42%, to side effects. Weak opioids were administered on an average for 28.0 days. A shift to Strong opioids was made in 92% of the cases due to inefficacy and in 8% because of side effects. Treatment with strong opioids lasted for an average of 46.6 days and can be considered the mainstay of cancer pain therapy. Performance status was not altered considerably during the study and hours of sleep were doubled. The analgesic ladder proved efficacious in 71% of the cases. Neurolytic procedures had to be used in 29%. The authors conclude that analgesics, as proposed by WHO, are the most suitable treatment arm in controlling pain in palliative treatment for advanced cancer patients. Lack of availability or underuse of opioids constitute the real obstacle to the application of this method.
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- 1987
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47. The importance of a home care program for patients with advanced cancer pain
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S Selmi, Marcello Tamburini, Vittorio Ventafridda, F. De Conno, and L Valera
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Cancer Research ,medicine.medical_specialty ,Weakness ,MEDLINE ,030218 nuclear medicine & medical imaging ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,Neoplasms ,medicine ,Humans ,Performance status ,business.industry ,General Medicine ,Advanced cancer ,Home Care Services ,Pain, Intractable ,Mood ,Pain Clinics ,Oncology ,030220 oncology & carcinogenesis ,Family medicine ,Physical therapy ,Quality of Life ,Anxiety ,medicine.symptom ,business - Abstract
At the Pain Clinic of the National Cancer Institute of Milan, a special Home Care Program has been set up to assist advanced cancer patients with pain and their families during their remaining survival. The Home Care Unit comprises a team of physicians, nurse clinicians, psychologists and many volunteers who are active both in the hospital and at the patient's home. This entire operation provides a continuous relationship between the family, the patient and the Home Care Unit. This Home Care Program, which is one of a kind with other forms of treatment for advanced cancer patients (i.e. hospices), has produced interesting results. Out of a sample group of 50 patients, 33 were monitored at home by the Home Care Unit while 17 had their families to do the monitoring. Over a six-week period the following results were reported: a) Improvement of psycho-emotional factors such as anxiety, weakness and mood for both patients and their families who entered the Home Care Program. b) The Quality of Life Index remained unchanged for the sample group that entered the Home Care Program whereas it deteriorated for patients monitored by their families. c) A decrease in the Integrated Pain Score for both groups; however, results showed a statistically significant difference in favor of patients on the Home Care Program. d) The Performance Status decreased by very little over the study period, and there was little difference between the two groups. These results confirm the need for a Home Care Program which must go hand in hand with the Pain Clinic as an effective way to control Total Pain.
- Published
- 1985
48. Patients' assessment of quality of care: a survey of a group of breast cancer patients in Italy
- Author
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Marcello Tamburini, Paola Viola, Gianni Tognoni, Alessandro Liberati, Gemma Martino, Renato Talamini, and Carlo Confalonieri
- Subjects
Adult ,Cancer Research ,medicine.medical_specialty ,Activities of daily living ,Breast Neoplasms ,Disease ,030218 nuclear medicine & medical imaging ,03 medical and health sciences ,0302 clinical medicine ,Breast cancer ,Patient Education as Topic ,Surveys and Questionnaires ,Adaptation, Psychological ,medicine ,Humans ,Mail questionnaire ,Quality of care ,Aged ,Quality of Health Care ,business.industry ,Age Factors ,Information quality ,General Medicine ,Consumer Behavior ,Middle Aged ,medicine.disease ,Oncology ,Italy ,030220 oncology & carcinogenesis ,Family medicine ,Quality of Life ,Female ,business - Abstract
Patients’ assessment of quality of care was investigated in 825 women with breast cancer treated in a group of specialized and non-specialized institutions in Italy. A 10-page mail questionnaire explored patients’ adjustment to the disease, satisfaction with care, and quality of the information on diagnosis and treatment. Most of the 428 (52 %) responders reported good or acceptable adjustment to the disease (as reflected by acceptable performance in some daily living activities), and favorable judgment about care providers, but many women complained of hospital organizational deficiencies. A contradictory picture emerged regarding the quality of information. Completeness and thoroughness appeared seriously deficient when examined objectively using a series of explicit predefined criteria, but patients’ assessments showed in most cases moderate or high satisfaction. The paper presents these results and discusses pros and cons in the use of patients’ opinions for evaluation of quality of care.
- Published
- 1985
49. Antidepressants for cancer pain and other painful syndromes with deafferentation component: comparison of amitriptyline and trazodone
- Author
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Vittorio Ventafridda, Cesare Bonezzi, A. Caraceni, F. Toscani, V. Silvani, Marcello Tamburini, L. Saita, F. De Conno, G. Guarise, and G. Ramella
- Subjects
Adult ,medicine.medical_specialty ,Neurology ,Amitriptyline ,Analgesic ,law.invention ,Random Allocation ,Randomized controlled trial ,Double-Blind Method ,law ,Neoplasms ,medicine ,Humans ,Paresthesia ,Aged ,Clinical Trials as Topic ,business.industry ,General Neuroscience ,Trazodone ,Middle Aged ,Anesthesia ,Chronic Disease ,Antidepressant ,Neuralgia ,Neurology (clinical) ,Neurosurgery ,Cancer pain ,business ,medicine.drug - Abstract
The Authors report a clinical multicentre experience with antidepressant agents (trazodone and amitriptyline) in the treatment of chronic cancer pain with deafferentation component. Forty-five patients were admitted to the study: 27 with oncological peripheral nerve lesions, 6 with post herpetic neuralgias, 10 with not oncological nerve lesions, 2 with central nervous lesions. Almost all of them were already being treated with NSAID associated with weak or strong opioids. A random double blind study was performed: 23 patients were treated with trazodone, 22 with amitriptyline. In the assessment of results, pain intensity, hours of sleep, hours standing and lying, side effects, mood, anxiety, weakness were all taken into consideration. The therapeutic analgesic efficacy of the two drugs proved to be similar.
- Published
- 1987
50. Parity and breast cancer: confirmed evidence of an effect on age at diagnosis
- Author
-
Lucio Bertario, Marcello Tamburini, Sergio Di Pietro, Giovanna Massara, and Maurizio Macaluso
- Subjects
Gynecology ,Adult ,Risk ,Cancer Research ,medicine.medical_specialty ,Analysis of Variance ,business.industry ,Obstetrics ,Confounding ,Age Factors ,Age at diagnosis ,Breast Neoplasms ,Middle Aged ,medicine.disease ,First birth ,Parity ,medicine.anatomical_structure ,Breast cancer ,Oncology ,Lactation ,Medicine ,Humans ,Female ,business ,Parity (mathematics) - Abstract
An evaluation is made of the hypothesis of Woods et al. (1) that the number of full-term pregnancies constitutes a factor of growth acceleration in breast cancer. Our results confirm, at least in part, the effect of parity on age at diagnosis of breast cancer. Patients with two or more children were significantly younger at the time of diagnosis than were those with none or one child. Age at first birth and duration of lactation do not seem to be, in this analysis, confounding factors for the observed association.
- Published
- 1982
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