Limitação terapêutica em oncologia pediátrica / Limitation of therapeutic in pediatric oncology

Este estudo possui como objetivo compreender a perspectiva de profissionais da saúde, de uma unidade de oncologia pediátrica, sobre limitação terapêutica no tratamento de pacientes pediátricos em processo de morte. Trata-se de uma pesquisa de cunho qualitativo, realizada em hospital de ensino. Foram entrevistados ao todo 16 profissionais da saúde que atuam em unidade de oncologia pediátrica. Foi utilizada a análise de conteúdo para a interpretação dos dados. Os resultados apontaram que o conhecimento sobre limitação terapêutica apresentado pelos profissionais versa a partir da experiência de cada um. Foram apresentadas dificuldades de comunicação à família, falta de consenso sobre as decisões entre os médicos e não participação de outros profissionais da equipe em qualquer etapa do processo decisório. A distanásia com criança ainda acontece, mas é evitada por gerar sofrimento. Ao prestar assistência ao paciente pediátrico oncológico, a equipe deve atuar como uma unidade de cuidado. Aponta-se a importância do trabalho multiprofissional como meio de facilitar as decisões que devem ser tomadas.(AU)

This study aims to understand the perspective of health professionals, who work in a pediatric oncology unit, on limitation of therapeutic effort in the treatment of pediatric patients in the process of death. This qualitative research was carried out in a teaching hospital. A total of 16 health professionals who work in a pediatric oncology unit were interviewed. Content analysis was used to analyze data. The results showed that the professionals’ knowledge about limitation of therapeutic effort is based on their own experience. Difficulties in communication to families, lack of consensus on decisions among doctors and lack of participation of the other team professionals in any stages of the decision-making process were addressed. Dysthanasia is still a reality for children, but it is avoided because of the suffering it causes. When providing assistance to pediatric patients with cancer, the team must act as a care unit. The importance of multiprofessional work is pointed out as way to make easier taking decisions that must be made.(AU)

The Path of Cicely Saunders: The "Peculiar Beauty" of Palliative Care.

This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". With "beauty" we mean, on the one hand, a way able to allow a personal path of research of the meaning of the disease and of the care, both for those who care and for those who are cared for. On the other hand, it seems to us that Cicely strongly suggests how this path can not be carried out alone, but is only possible within the context of a network of relationships and support, in a so called "relational autonomy", for the patient, included in a "care ethics". The authors believe that the work extensively documents as the overall approach of Cicely, traditional but always to be rediscovered, is still today the most convincing way of conception and action of palliative care.

Self-efficacy for coping: utility of the Cancer behavior inventory (Italian) for use in palliative care.

BACKGROUND: Newer models of palliative and supportive cancer care view the person as an active agent in managing physical and psychosocial challenges. Therefore, personal efficacy is an integral part of this model. Due to the lack of instruments in Italian to assess coping self-efficacy, the present study included the translation and validation of the Italian version of the Cancer Behavior Inventory-Brief (CBI-B/I) and an initial analysis of the utility of self-efficacy for coping in an Italian sample of palliative care patients. METHODS: 216 advanced cancer patients who attended palliative care clinics were enrolled. The CBI-B/I was administered along with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), the Mini Mental Adjustment to Cancer Scale (Mini-MAC), the Cancer Concerns Checklist (CCL), and the Hospital Anxiety and Depression Scale (HADS). The Eastern Cooperative Oncology Group Performance Status (ECOG-PS) ratings of functional capacity were completed by physicians. RESULTS: Factor analysis confirmed that the structure of the CBI-B/I was consistent with the English version. Internal consistency reliability and significant correlations with the EORTC QLQ-C30, Mini-MAC, and HADS supported the concurrent validity of the CBI-B/I. Differences in CBI-B/I scores for high versus low levels of the CCL and ECOG-PS supported the clinical utility of the CBI-B/I. CONCLUSIONS: The CBI-B/I has strong psychometric properties and represents an important addition to newer model of palliative and supportive care. In order to improve clinical practice, the CBI-B/I could be useful in identifying specific self-efficacy goals for coping in structured psychosocial interventions.

Quality of Life Perception, Cognitive Function, and Psychological Status in a Real-world Population of Glioblastoma Patients Treated With Radiotherapy and Temozolomide: A Single-center Prospective Study.

BACKGROUND: Health-related quality of life (HRQoL), cognitive function, and psychological status represent an important focus during the treatment of glioblastoma patients. Nevertheless, few randomized, prospective clinical trials have analyzed these factors, and very little is known in the real-clinical world. We evaluated these characteristics in glioblastoma patients treated with standard first-line therapy outside clinical trials. PATIENTS AND METHODS: In total, 111 newly, histologically diagnosed glioblastoma patients treated at our oncology center with radiotherapy and temozolomide were prospectively enrolled. No patient was enrolled in an experimental clinical trial. We assessed HRQoL, cognitive function, and psychological status before starting treatment, at the end of radiotherapy, and every 3 months until 9 months after the end of radiotherapy using EORTC QLQ-C30, BN20, MMSE, and HADS questionnaires. RESULTS: Global health status, physical, cognitive, and social functioning remained unchanged throughout the study period. A statistically significant change was found in emotional functioning as well as a clinically meaningful amelioration in role functioning between the baseline assessment and 9 months after radiotherapy. Patients older than 65 years reported greater impairment on the bladder control scale than younger patients. When considering tumor location, global health status, communication deficit, and drowsiness, scores were significantly different between the right and left hemispheres. Female patients had a clinically relevant lower score for physical functioning at baseline and 3 months after radiation therapy. Female patients also had a clinically relevant lower depression score at 9 months after radiation therapy. CONCLUSIONS: In routine neurooncology practice, HRQoL, cognitive function, and psychological status did not worsen during first-line treatment in glioblastoma patients receiving standard radiotherapy and temozolomide treatment. However, some patient subgroups, such as elderly and female patients, may have different experiences with treatment, and further investigation is required.

Self-efficacy for Coping Moderates the Effects of Distress on Quality of Life in Palliative Cancer Care.

Recent aggressive chemotherapeutic and combined treatments have resulted in increased survivorship for advanced stage breast cancer. In some patients, treatment produces an actual abatement of their cancer, while in others treatment mitigates the progression of cancer bringing those patients into palliative care where their chronic disease requires continuous management. There is also evidence that the majority of palliative-care cancer patients have a deteriorating quality of life that only precipitously declines in the final few weeks of life. The new paradigm of patient-centered care for palliative patients is resulting in a new model of treatment in which the self-efficacy seems to play an important role. The present study represents an extension of the role of self-efficacy for coping to palliative care. Using a stress-coping model, the primary aim of this study was to evaluate a process model, in which self-efficacy for coping with cancer is a moderator between stress and the quality of life in a sample of breast cancer patients in palliative care. The secondary aim was to validate a specific domain coping self-efficacy scale, the Cancer Behavior Inventory. The current study confirmed the role of self-efficacy for coping with cancer as moderator of the relationship between stress and quality of life of a sample of breast cancer patients in palliative care. In addition, this study confirmed the structure, reliability and validity of the scale.

Position paper of the Italian Association of Medical Oncology on early palliative care in oncology practice (Simultaneous Care).

One of the priorities of personalized medicine regards the role of early integration of palliative care with cancer-directed treatments, called simultaneous care. This article, written by the Italian Association of Medical Oncology (AIOM) Simultaneous and Continuous Care Task Force, represents the position of Italian medical oncologists about simultaneous care, and is the result of a 2-step project: a Web-based survey among medical oncologists and a consensus conference. We present the opinion of more than 600 oncologists who helped formulate these recommendations. This document covers 4 main aspects of simultaneous care: 1) ethical, cultural, and relational aspects of cancer and implications for patient communication; 2) training of medical oncologists in palliative medicine; 3) research on the integration between cancer treatments and palliative care; and 4) organizational and management models for the realization of simultaneous care. The resulting recommendations highlight the role of skills and competence in palliative care along with implementation of adequate organizational models to accomplish simultaneous care, which is considered a high priority of AIOM in order to grant the best quality of life for cancer patients and their families.

Early Integration of Palliative Care in Oncology Practice: Results of the Italian Association of Medical Oncology (AIOM) Survey.

BACKGROUND: Early integration of palliative care in oncology practice ("simultaneous care", SC) has been shown to provide better care resulting in improved quality-of-life and also survival. We evaluated the opinions of Italian Association of Medical Oncology (AIOM) members. PATIENTS AND METHODS: A 37-item questionnaire was delivered to 1119 AIOM members. Main areas covered were: social, ethical, relational aspects of disease and communication, training, research, organizational and management models in SC. Three open questions explored the definition of Quality of Life, Medical Oncologist and Palliative Care. RESULTS: Four hundred and forty-nine (40.1%) medical oncologists returned the questionnaires. Forty-nine percent stated they address non-curability when giving a diagnosis of metastatic tumor, and 43% give the information only to patients who clearly ask for it. Fifty-five percent say the main formative activity in palliative medicine came from attending meetings and 90% agree that specific palliative care training should be part of the core curriculum in oncology. Twenty-two percent stated they consulted guidelines for symptom management, 45% relied upon personal experience and 26% make a referral to a palliative care specialist. Seventy-four percent were in favor of more research in palliative medicine. An integration between Units of Oncology and Palliative Care Services early in the course of advanced disease was advocated by 86%. Diverse and multifaceted definitions were given for the concepts of Quality of Life, Palliative Care and Medical Oncologist. CONCLUSION: SC is felt as an important task, as well as training of medical oncologists in symptom management and research in this field.

Systematic versus on-demand early palliative care: results from a multicentre, randomised clinical trial.

BACKGROUND: Early palliative care (EPC) in oncology has been shown to have a positive impact on clinical outcome, quality-of-care outcomes, and costs. However, the optimal way for activating EPC has yet to be defined. METHODS: This prospective, multicentre, randomised study was conducted on 207 outpatients with metastatic or locally advanced inoperable pancreatic cancer. Patients were randomised to receive 'standard cancer care plus on-demand EPC' (n = 100) or 'standard cancer care plus systematic EPC' (n = 107). Primary outcome was change in quality of life (QoL) evaluated through the Functional Assessment of Cancer Therapy - Hepatobiliary questionnaire between baseline (T0) and after 12 weeks (T1), in particular the integration of physical, functional, and Hepatic Cancer Subscale (HCS) combined in the Trial Outcome Index (TOI). Patient mood, survival, relatives' satisfaction with care, and indicators of aggressiveness of care were also evaluated. FINDINGS: The mean changes in TOI score and HCS score between T0 and T1 were -4.47 and -0.63, with a difference between groups of 3.83 (95% confidence interval [CI] 0.10-7.57) (p = 0.041), and -2.23 and 0.28 (difference between groups of 2.51, 95% CI 0.40-4.61, p = 0.013), in favour of interventional group. QoL scores at T1 of TOI scale and HCS were 84.4 versus 78.1 (p = 0.022) and 52.0 versus 48.2 (p = 0.008), respectively, for interventional and standard arm. Until February 2016, 143 (76.9%) of the 186 evaluable patients had died. There was no difference in overall survival between treatment arms. INTERPRETATIONS: Systematic EPC in advanced pancreatic cancer patients significantly improved QoL with respect to on-demand EPC.

A questionnaire to evaluate the knowledge and attitudes of health care providers on pain.

The aims of this study were to survey the knowledge and attitudes of Italian health care professionals toward pain and develop a valid instrument to assess pain knowledge of physicians and nurses. A 21-item questionnaire on a Likert scale was given to 4,961 health professionals in 20 hospitals in Italy who volunteered to participate in the study. The results were analyzed psychometrically in three phases: the Principal Component Analysis phase identified two components, of which only the one that had 10 items about pain knowledge and attitudes (PAK) was studied; the Homogeneity Analysis revealed its acceptable internal reliability (Cronbach's alpha=0.72) and confirmed the Likert equidistance of the item options response; and the Confirmatory Factor Analysis proved that it had a very good construct validity. A standardized score was calculated on the PAK questionnaire using the final 10 selected items, considering 100% as the best level of knowledge of pain management and 0% as the worst. The standardized mean score on the whole sample was equal to 52.6% (95% Confidence Interval: 52.3%-53.0%). There was a statistically significant difference (P<0.001) in percentage score between physicians (56.5%) and nurses (51.3%). Knowledge was best among physicians in Anesthesiology and Emergency; this was followed by doctors in Medicine and then surgeons. The knowledge of nurses was almost constant. This scale fills a void by providing a validated instrument for testing the general knowledge about pain treatment of hospital staff. It is brief and can easily be administered to a considerable number of people.

Prevalence and treatment of pain in adults admitted to Italian hospitals.

BACKGROUND: Very few studies have been conducted on the presence and control of pain in Italian hospitals. AIMS: The present study estimates pain prevalence and therapy in Italian hospitalised patients. METHODS: In the autumn of 2000, a survey was taken on 4523 inpatients throughout Italy. All eligible patients were given a questionnaire with two Numerical Rating Scales (NRS) concerning their pain intensity at interview and over the previous 24 h. Nurses were given a second questionnaire asking for information on analgesic treatment and another NRS about the pain they supposed the patient felt. RESULTS: At interview, 91.2% (95%CI: 90.3-92.1%) of the patients reported pain; 46.6% reported severe pain. The prevalence of severe pain was significantly lower in women and was double in general medicine wards compared to surgical wards. The degree of agreement between the pain reported by the patient and the pain scores given by the nurse was poor (Cohen K=0.318). Only 28.5% of the inpatients had taken analgesics in the past 24 h and the probability of receiving analgesic treatment was higher for women (adjusted OR=1.33, 95%CI: 1.14-1.54) and lower for general medicine compared to surgical wards (adjusted OR=0.55, 95%CI: 0.45-0.64), while it was unrelated both to the patient's self-reported pain and to level of pain assessed by the nurse. CONCLUSIONS: Pain affects an impressively high percentage of inpatients and is largely untreated and unrecognised in Italian wards. Educational intervention is required to improve the knowledge and attitudes of health professionals towards the approach and handling of patients in pain.