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Barazzetti G.,Vita-Salute San Raffaele University | Barazzetti G.,University of Lausanne | Borreani C.,Italian National Cancer Institute | Miccinesi G.,ISPO Institute for the Study and Prevention of Cancer | Toscani F.,Research Institute for Palliative Medicine Lino Maestroni
BMC Palliative Care

Background. In palliative care it would be necessary to refer to a model. Nevertheless it seems that there are no official statements which state and describe that model. We carried out an analysis of the statements on practice and ethics of palliative care expressed by the main health organizations to show which dimensions of end-of-life care are taken into consideration. Methods. The official documents by the most representative health organisations committed to the definition of policies and guidelines for palliative and end-of-life care had been considered. The documents were analysed through a framework of the components of end-of-life care derived from literature, which was composed of 4 main "areas" and of 12 "sub-areas". Results. Overall, 34 organizations were identified, 7 international organisations, and 27 organisations operating on the national level in four different countries (Australia, Canada, UK and United States). Up to 56 documents were selected and analysed. Most of them (38) are position statements. Relevant quotations from the documents were presented by "areas" and "sub-areas". In general, the "sub-areas" of symptoms control as well as those referring to relational and social issues are more widely covered by the documents than the "sub-areas" related to "preparation" and to "existential condition". Indeed, the consistency of end-of-life choices with the patient's wishes, as well as completion and meaningfulness at the end of life is given only a minor relevance. Conclusions. An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model. © 2010 Barazzetti et al; licensee BioMed Central Ltd. Source

Ripamonti C.I.,Italian National Cancer Institute | Borreani C.,Italian National Cancer Institute | Maruelli A.,Psychology Unit | Proserpio T.,Italian National Cancer Institute | And 2 more authors.

Aims and background. Spiritual and religious needs are part of a patient's clinical history. The aim of the study was to validate the System of Belief Inventory (SBI-15R) in Italy. It is a feasible way to collect useful information on spiritual needs and resources of patients at any stage of the disease. Methods. After the translation procedure, the psychometric properties of the Italian version of SBI-15R were evaluated in patients with non-advanced cancer cared for in four care settings. All patients were administered the Italian version of SBI-15R together with an hoc item inquiring about spirituality - "I believe I am a spiritual person", which was supposed to be correlated with the SBI-15R score. Results. A total of 257 patients were enrolled (mean age, 53.6 years; 191 females, 50% breast cancers, 12% had mestastases). As regards spirituality and religious beliefs, 47.9% were churchgoers; 42% believers but not churchgoers, and 7.8% non-believers; 86.7% of the patients were catholic. The construct validity was high both for the Belief Scale (Cronbach alpha = 0.946) and for the Support Scale (Cronbach alpha = 0.897). The mean (± SD) SBI-15R scores of the different groups of patients (knowngroups validity) for the "Support" scale was 9.7 (± 3.4) for churchgoers, 4.9 (± 3.2) for believers non-churchgoers, and 0.8 (± 1.4) for non-believers (P <0.0001, F test). For the "beliefs" scale, it was 25.4 (± 4.8) for churchgoers, 18.1 (± 6.3) for believers nonchurchgoers, and 3.4 (± 3.5) for non-believers (P <0.0001, F test). Regarding the test-retest reliability (n = 68), Lin's concordance correlation for the "Support" scale was 0.890 (0.841; 0.939 95% CI) and for the "Belief" scale was 0.969 (0.955; 0.984 95% CI). The correlation between the statement "I believe I ama spiritual person" and the SBI-15R scores was 0.475 for the "Support" scale and 0.473 for the "Belief" scale." Conclusions. The Italian version of SBI-15R is a valid and reliable assessment tool to evaluate religiousness and spirituality in cancer patients. Free full text available at www.tumorionline.it. Source

Maruelli A.,Lilt | Ripamonti C.,Supportive Care in Cancer Unit | Bandieri E.,Oncology Unit | Miccinesi G.,ISPO Institute for the Study and Prevention of Cancer | And 2 more authors.

Aims and background. Sexuality is an important aspect of quality of life, but health care professionals still avoid discussing sexual issues with cancer patients. Methods and study design. We present a secondary analysis of sexuality issues according to the results of a survey on 266 patients with early-stage cancer. The aim of the survey was to ascertain the feasibility and clinical usefulness of questionnaires (Patient Dignity Inventory, PDI; Hospital Anxiety and Depression Scale, HADS; Edmonton Symptom Assesssment Scale, ESAS; FACIT-spiritual well-being scale, FACIT-SP; System of Belief Inventory, SBI-15R) investigating aspects such as dignity, hope and research of meaning in life. The present study is an ancillary analysis of the full sample, and we have focused on the results of FACIT-SP about the correlation between sexual satisfaction and clinical characteristics in 108 patients having solid tumors and 86 having hematological malignancies with no metastases who were on active cancer treatment or in follow-up in four different cancer treatment settings during the first half of 2011. Results. The median age of the 194 patients was 65 years, 112 were women, 155 were undergoing treatment and 39 were in follow-up. Eighty-three patients were above the cutoff score for HADS. Among the 171 believers, 80 were churchgoers and 91 were nonchurchgoers, whereas the nonbelievers among the patients were 23. Thirty-five percent of the patients did not respond to the sexuality item of the questionnaire. Among the responders (n = 126), 36% reported having no sexual satisfaction (score = 0). Sexual dissatisfaction was greater in older patients (47% vs 31%, not significant [NS]), women (43% vs 27%, NS), patients on treatment (38% vs 25%, NS), patients who requested psychological support (53% vs 25%, P = 0.001), patients with high levels of anxiety and depression, i.e., HADS scores >10 (44% vs 30%, NS), nonbelievers (61% vs 34% among churchgoers, 29% among believers but nonchurchgoers, P = 0.046). Conclusions. One out of 3 patients did not respond to the item on sexuality. Among the responders, 1 out of 3 reported having no sexual satisfaction. Half of the patients receiving psychological support considered their sexual life not satisfying. Clinical interviews and specific questionnaires on sexuality should be used to investigate this particular aspect. Copyright - Il Pensiero Scientifico Editore. Source

Ripamonti C.,Italian National Cancer Institute | Buonaccorso L.,AMO | Maruelli A.,Lilt | Bandieri E.,Oncological Unit | And 4 more authors.

Backgrounds. In Oncology, little is known about dignity-related distress and the issues that influence the sense of dignity for patients. We validated the Patient Dignity Inventory (PDI) questionnaire in Italian patients on oncological active treatments. Methods. After the translation procedures, the PDI was administered to 266 patients along with other questionnaires to assess the psychometric properties of the Italian version of PDI. Factor structure was tested by both explorative and confirmatory factor analyses. Concurrent validity was tested through convergent and divergent validity with validated questionnaires inquiring about physical and psychological symptoms, and religiosity. The test/retest reliability was assessed through the concordance coefficient of Linn (two-week interval, 80 patients). Results. The explorative analysis suggested one factor only loading highly on all the 25 items (>.45) and explaining the 48% variance; confirmative analysis and Cronbach alpha (0.96) confirmed the adequacy of the one-factor model. In the 2-week test-retest study, a concordance coefficient of 0.73 (95% CI, 0.64-0.83) was found. High correlations of problems with dignity were found with both physical and psychological symptoms (0.52 and 0.64 rho coefficient, respectively), and a moderate inverse correlation with spiritual well being (-.40). The dignity construct, as measured by PDI, proved to be orthogonal to that of religiosity (-.02). Conclusions. The Italian version of PDI is a valid and reliable tool to evaluate the dignity related-distress in out-patients with solid and hematological cancers, on active oncological treatments, in non advanced stages of the disease. © Il Pensiero Scientifico Editore. Source

West E.,VU University Amsterdam | West E.,Care Network | Romoli V.,Care Network | Di Leo S.,Care Network | And 4 more authors.
BMC Palliative Care

Background: In 2009 two randomised cluster trials took place to assess the introduction of the Italian Version of the Liverpool Care Pathway in hospitals and hospices. Before and after data were gathered. The primary aim of this study is to evaluate the feasibility of using a combination of assessment methods aimed at different proxy respondents to create a means of measuring quality of care at the end of life. We also aim to explore whether there are differences in response to this approach between the hospice and hospital inpatient settings. Methods. A retrospective design was used. Eligible deaths were traced through death registries, and proxies were used to give information. Four procedures of assessment were used to measure different dimensions. Feasibility was assessed through compliance and adherence to the study instruments, and measured against standards derived from previous after-death studies. The proxy caregiver's rating of the study tools was also measured, to gauge feasibility and effectiveness. All consecutive cancer deaths that occurred in the study period were eligible. In both trials, deaths were excluded if the patient was a relative of hospital/hospice staff. 145 patients were recruited from the Hospital setting, and 127 from Hospice. Results: A high proportion of non-professional caregivers were interviewed - in both hospital (76.6%) and hospice (74.8%). There was no significant difference in the median number of days in each setting. 89.0% of hospital patients' GPs and 85.0% of hospice patients' GPs were interviewed. Care procedures were recorded in all hospice cases, and were missing in only 1 hospital case.52.7% of Hospital patients' relatives and 64.12% Hospice relatives were assessed to have been caused a low level of distress through the study. Conclusions: The data shows high levels of compliance and adherence to the study instruments. This suggests that this approach to assessing quality of care is feasible, and this coupled with low levels of distress caused by the study instruments suggest effectiveness. There were no substantial differences between the hospice and hospital settings. © 2014 West et al.; licensee BioMed Central Ltd. Source

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