Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study

ABSTRACT BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study.

BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency. DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil. METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Phytocosmetic Containing Pink Pepper Extracts Obtained by Sustainable Extraction.

Pink pepper (Schinus terebinthifolius Raddi) has high potential for commercial use because of its biological activities (anti-inflammatory, antitumor, and antioxidant activities, among others). Herein, the antioxidant activity of a topical formulation containing pink pepper extract obtained by supercritical carbon dioxide extraction is reported. The effects of extraction pressure (100-300 bar) and temperature (40-60 °C) on its antioxidant activity were investigated. The extracts obtained at 50-60 °C showed a higher inhibition percentage in the α,α-diphenyl-ß-picrylhydrazyl (DPPH) assay (80.16-91.27 %), regardless of pressure. The extract obtained under optimized conditions (200 bar and 50 °C) was incorporated into an oil-in-water emulsion containing 2 % (m/m) pink pepper extract. The product presented a creamy texture, light rose color, mild spicy odor, and desirable pH for a topical formulation. Furthermore, the product was stable and remained effective when stored and protected from heat and light, showing 35.38 % inhibition of DPPH.

Role of clinical pharmacist in the palliative care of adults and elderly patients with cancer: A scoping review.

OBJECTIVE: We conducted this scoping review to map and summarize scientific evidence on the role of clinical pharmacists in the palliative care of adults and elderly patients with cancer. DATA SOURCES: A literature search was performed in MEDLINE, PubMed Central, Embase, Web of Science, Scopus, and BVS/BIREME for studies published until November 22nd, 2020. Studies that reported work experiences adopted by clinical pharmacists in the palliative care of adults and elderly patients with cancer were included. Two independent authors performed study selection and data extraction. Any disagreements were resolved by discussion with the third and fourth authors. The pharmacist interventions identified in the included studies were described based on key domains in the DEPICT v.2. DATA SUMMARY: A total of 586 records were identified, of which 14 studies fully met the eligibility criteria. Most of them were conducted in the United States of America (n = 5) and Canada (n = 5) and described the workplace of the pharmacist in clinic/ambulatory (n = 10). Clinical pharmacists performed several activities and provided services, highlighting medication review (n = 12), patient and caregivers education (n = 12), medication histories and-or medication reconciliation (n = 6). The pharmacist interventions were mostly conducted for patients/caregivers (n = 13), by one-on-one contact (n = 14), and by face-to-face (n = 13). Pharmacists were responsible mainly for change or suggestion for change in therapy (n = 12) and patient counselling (n = 12). Pharmacist interventions were well accepted by the clinical team. Overall, studies showed that pharmacists, within an interdisciplinary team, had significant impacts on measured outcomes. CONCLUSIONS: In recent years, there have been advances in the role of the pharmacist in palliative care of patients with cancer and there are great opportunities in this field. They play an important role in managing cancer pain and other symptoms, as well as resolving drug related problems. We encourage more research to be carried out to strengthen this field and to benefit patients with advanced cancer with higher quality of life.

Characteristics of Palliative Care Publications by South American Authors in the Last 20 Years: Systematic Literature Review With Bibliometric Analysis.

CONTEXT: Research on palliative care (PC) can be used as a direct measure to assess the level of PC development in a country or region. OBJECTIVES: To investigate the scientific production in the field of PC in South American countries over the last two decades. METHODS: The search was performed using the terms "palliative care," "hospice care," "hospices," and "terminal care" combined with the names of South American countries in several databases. The trend in publications over time was analyzed by linear equations (R2) and by calculating the annual percentage change (APC). The article citations were extracted from Web of Science (WOS), Scopus and Google Scholar, and the countries' impact factors (IFc) were calculated. RESULTS: Of the 4259 identified articles, 641 were included in the analysis. There was a clear increase in the number of publications over the analyzed period (R2 = 0.8794, APC = 14.42%). Brazil was the country with the highest number of publications (n = 389); however, after adjustments by population, GDP and number of researchers, Chile was the country with the greatest prominence, including the highest IF in WOS (4.409). Only 8.3% of publications were systematic review, clinical trial or cohort studies; only 15.4% were funded. CONCLUSION: This bibliometric review identified an annual increase of 14% in the number of scientific publications by researchers from South America over the last 20 years. Although Brazil produced the most articles, Chile, had the most efficient scientific production. In general, the articles had low potential for scientific impact.

A musicoterapia em oncologia: percepções de crianças e adolescentes em cuidados paliativos / Musicoterapia en oncología: percepciones de niños y adolescentes en cuidados paliativos / Music therapy in oncology: perceptions of children and adolescents in palliative care

Resumo Objetivo analisar as percepções de crianças e adolescentes com câncer em cuidados paliativos sobre a musicoterapia. Método pesquisa de campo, com abordagem qualitativa, realizada com sete crianças e adolescentes hospitalizadas. A técnica de desenho-estória foi realizada inicialmente a partir do desenho sobre os sentimentos diante da hospitalização e a estória do desenho. Em seguida, houve a interação musical, desenho sobre o significado da música diante do processo de hospitalização, e a estória do desenho. Para análise, utilizou-se a técnica de análise de conteúdo. Resultados antes da musicoterapia, crianças e adolescentes expressaram sentimentos de tristeza, medo e saudade relacionados ao rompimento do vínculo familiar durante o processo de hospitalização. Após receberem a musicoterapia, elas expressaram as sensações de prazer e bem-estar que essa vivência pode proporcionar, permitindo-lhes a expressão dos sentimentos mais profundos. Conclusão a musicoterapia pode beneficiar a criança e o adolescente com câncer uma vez que permite a expressão de sentimentos, possibilita o resgate de lembranças e proporciona esperança diante da situação vivenciada, além do alívio da dor. Implicações para a prática a musicoterapia contribui no processo paliativista, podendo conferir uma melhor qualidade de vida às crianças e adolescentes com câncer.

Resumen Objetivo analizar las percepciones de niños y adolescentes con cáncer en cuidados paliativos sobre la musicoterapia. Método investigación de campo con enfoque cualitativo, realizada con siete niños y adolescentes. La técnica del dibujo-cuento se llevó a cabo inicialmente basándose en el dibujo de los sentimientos sobre la hospitalización y en el cuento del dibujo. Luego hubo interacción musical, con dibujo sobre el significado de la música durante el proceso de hospitalización y el cuento del dibujo. Para el análisis, se utilizó la técnica de análisis de contenido. Resultados antes de la musicoterapia, los niños y adolescentes expresaron sentimientos de tristeza, miedo y anhelo relacionados con la ruptura del vínculo familiar durante el proceso de hospitalización. Después de recibir musicoterapia, manifestaron las sensaciones de placer y bienestar que esta experiencia les puede brindar, permitiéndoles expresar sus sentimientos más profundos. Conclusión la musicoterapia puede beneficiar a niños y adolescentes con cáncer ya que permite la expresión de sentimientos, posibilita el rescate de recuerdos es fuente de esperanza ante la situación vivida, además de aliviar el dolor. Implicaciones para la práctica la musicoterapia contribuye al proceso paliativo y puede brindar una mejor calidad de vida a los niños y adolescentes con cáncer.

Abstract Objective to analyze the perceptions of children and adolescents with cancer in palliative care about music therapy. Method field research with a qualitative approach, conducted with seven children and adolescents. The drawing-story technique was initially carried out based on drawings on feelings about hospitalization and the drawing story. Then there was the musical interaction, drawing on the meaning of music in the face of the hospitalization process, and the story of the drawing. For analysis, the content analysis technique was used. Results before music therapy, the children and adolescents expressed feelings of sadness, fear and longing related to the breaking of the family bond during the hospitalization process. After receiving music therapy, they expressed feelings of pleasure and well-being that this experience can provide them, allowing them to express their deepest feelings. Conclusion music therapy can benefit children and adolescents with cancer as it allows for the expression of feelings, enables the rescue of memories and provides hope in the face of the situation experienced, in addition to pain relief. Implications for the practice music therapy contributes to the palliative process and can offer better quality of life to children and adolescents with cancer.

Association between multiple symptoms and quality of life of paediatric patients with cancer in Brazil: a cross-sectional study.

OBJECTIVES: To identify the association of multiple symptoms and clinical characteristics on quality of life (QoL) of paediatric patients with cancer. DESIGN: A descriptive, cross-sectional study. SETTING: South American Children's Hospital for Cancer Treatment (Barretos, São Paulo, Brazil). PARTICIPANTS: A total of 157 participants, 116 paediatric patients, diagnosed with cancer, undergoing chemotherapy treatment, between 7 and 18 years of age and 41 proxies for patients between 2 and 6 years of age. PRIMARY OUTCOME MEASURES: The severity and prevalence ofsymptoms were identified through the use of a culturally adapted multi-symptomscreening tool, and the influence these symptoms, in association with clinicalcharacteristics, had on the QOL of Brazilian pediatric cancer patients wasassessed. RESULTS: Prevalent symptoms identified by all participants were 'feeling tired' (98, 62.4%), 'feeling more or less hungry (do not feel like eating) than you usually do' (96, 61.1%), 'changes in taste (flavour of the food)' (89, 56.7%), 'throwing up or feeling like you may throw up' (77, 49%) and 'changes in how your body (visually) or face looks' (72, 45.9%). The multivariate analysis for symptom severity as reported by proxies showed that surgery (OR 0.20, 95% CI 0.04 to 0.98, p=0.047) and time of diagnosis (OR 0.14, 95% CI 0.03 to 0.66, p=0.012) were associated with a decreased OR of high severity symptoms.An analysis of the clinical characteristics associated with Pediatric Quality of Life Inventory (PedsQL) demonstrated no significant effect on QoL in any of the domains evaluated. The association between Symptom Screening in Pediatrics Tool and PedsQL in the self-report version demonstrated a significant negative influence of all symptoms on the QoL. CONCLUSIONS: The prevalence of symptoms experienced among pediatric patients during treatment was high and significantly influenced all aspects of quality of life,especially in the emotional domain.

Symptom screening in paediatrics tool for screening multiple symptoms in Brazilian patients with cancer: a cross-sectional validation study.

OBJECTIVE: The objective of this study was to translate, culturally adapt and validate the Symptom Screening in Paediatrics Tool (SSPedi) into the Brazilian Portuguese language to be used by paediatric oncology patients in Brazil. DESIGN: A descriptive, cross-sectional study that follows an established methodology for translation and cultural adaptation, developed in two phases: phase I, linguistic translation and cultural adaptation of the SSPedi scale and phase II, psychometric properties evaluation. SETTING: Children's Hospital for Cancer Treatment in Latin America. PARTICIPANTS: Paediatric patients between 7 and 18 years of age and proxies of patients between 2 and 6 years of age, diagnosed with cancer and undergoing chemotherapy treatment. Patients and proxies with significant neuropsychiatric disorders and/or visual impairment that prevented the ability to read were excluded. PRIMARY OUTCOME MEASURES: Construct validation of SSPedi using convergent validity and contrasted groups. Reliability was evaluated using Cronbach's alpha test and assessing the retest using the intraclass correlation coefficient (ICC). RESULTS: The psychometric properties of the symptom screening tool were evaluated using 157 participants, of which 116 were patients and 41 were proxies. Convergent validity and hypothesised correlations (Spearman's r>0.4) were confirmed for both self- and proxy-reported versions of the assessment tool. No significant differences found between the two contrasting groups. Assessment of SSPedi resulted in an internal consistency of reliability of α=0.77 (95% CI 0.70 to 0.82) for the self and α=0.81 (95% CI 0.71 to 0.88) for the proxy and overall reproducibility ICC values of (95% CI), 0.54 (0.15 to 0.77) and 0.77 (0.64 to 0.86). CONCLUSION: SSPedi was found to be culturally and linguistically adaptable and considered valid and reliable for use by paediatric oncology patients in Brazil. The new translated and adapted version was named SSPedi-BR.

In vitro antioxidant activity and solar protection factor of blackberry and raspberry extracts in topical formulation.

BACKGROUND: Berries are known for their antioxidant activity due to the presence of flavonoids. Antioxidants' usage guarantees skin protection against free radicals and, flavonoids, especially, can act as sunscreen. The aim of this paper was to evaluate solar protection factor (SPF) and antioxidant activity in vitro of blackberry and raspberry extracts incorporated in topical formulation and study their stability. RESULTS: Raspberry presented 29.93 mg of anthocyanins/100 g of fruit and blackberry 65.58 mg of anthocyanins/100 g of fruit. In vitro solar protection factor was 54.57 to blackberry and 37.32 to raspberry. When incorporated in O/W emulsions, final formulations showed light pink color, creamy aspect, and typical fruity odor. Formulations submitted to indirect light and stove showed odor and color alterations. CONCLUSIONS: Based on the results, formulations containing extracts should be kept under refrigeration in opaque package to ensure stability due to the presence of flavonoids. In addition, blackberry and raspberry extracts are potential natural alternatives to be used as sunscreen and to prevent skin aging.

Núcleo de Educação Terapêutica: um espaço de invenção na clínica com crianças psicóticas / The Therapeutic Education Center: a place for invention in clinic services for psychotic children / Centre d’éducation thérapeutique: un espace d’invention dans la clinique avec des enfants psychotiques / Centro de Educación Terapéutica: un espacio de creación en la práctica clínica con niños psicóticos / Zentrum für Therapeutische Erziehung: Ein Ort der Kreativität in der Behandlung psychotischer Kinder / 理療教育中心：兒童精神病臨床实践的創造性空間 摘要

Este artigo tem o objetivo de transmitir a experiência de implementação do Núcleo de Educação Terapêutica no Instituto de Psicologia da USP. A constituição do NET inspira-se no desenvolvimento de um campo teórico-clínico denominado Educação Terapêutica que aproxima Psicanálise e Educação e enseja um conjunto de práticas de tratamento do autismo e da psicose infantil. Apresentaremos os fundamentos teórico-clínicos que sustentam essa prática e analisaremos, à luz de um caso clínico, os efeitos de mudança de posição subjetiva e reordenamento do gozo como frutos do ato analítico no tratamento de uma criança psicótica.

This article aims to present the experience of implementing the University of São Paulo’s Psychology Institute’s Therapeutic Education Center. The Center was inspired by a theoretical and clinical field called Therapeutic Education — a set of treatment and educational practices aimed at autism and childhood psychosis. We present the theoretical and clinical foundations that support this practice and analyze, in the light of a case report, the effects of change in the subjective position and in the reorganization of enjoyment as a result of analytic acts in the treatment of a psychotic child.

Cet article vise à transmettre l’expérience de la mise en œuvre du Centre d’éducation thérapeutique à l’Institut de psychologie de l’Université de São Paulo. La constitution du Centre d’éducation thérapeutique s’est inspirée du développement d’un champ théorique et clinique dénommé Éducation thérapeutique qui fait le rapprochement entre la psychanalyse et l’éducation et donne lieu à un ensemble de pratiques de traitement de l’autisme et de la psychose infantile. On présentera les fondements théoriques et cliniques soutenant cette pratique et on analysera, à la lumière d’un cas clinique, les effets de changement de position subjective et réordonnancement de la jouissance comme des fruits de l’acte analytique dans le traitement d’un enfant psychotique.

Este artículo tiene como objetivo transmitir la experiencia de la implementación del Centro de Educación Terapéutica en el Instituto de Psicología de la Universidad de São Paulo (USP). La constitución del Centro de Educación Terapéutica se inspira en el desarrollo de un campo teórico-clínico denominado Educación Terapéutica que realiza una aproximación entre el Psicoanálisis y la Educación, y que implica un conjunto de prácticas para el tratamiento del autismo y de la psicosis infantil. Presentaremos los fundamentos teóricos y clínicos que son la base de esta práctica y analizaremos, a la luz de un caso clínico, los efectos de cambio en la posición subjetiva y el reordenamiento del gozo como frutos del acto analítico en el tratamiento de un niño psicótico.

Dieser Artikel beschreibt die Erfahrungen, die anlässlich der Implementierung des Zentrum für Therapeutische Erziehung im Psychologischen Institut der Universität von São Paulo gemacht wurden. Das Zentrum für Therapeutische Erziehung basiert sich auf den Aufbau eines theoretisch-klinischen Arbeitsfeldes, dass Therapeutische Erziehung genannt wird und dessen Ziel es ist, die Erkenntnisse der Psychoanalyse auf die Erziehungswissenschaften anzuwenden. Es bietet daher verschiedene Verfahrensweisen zur Behandlung von Autismus und kindlicher Psychose. Wir stellen zunächst die theoretisch-klinischen Grundlagen dieser Praxis vor und analysieren dann anhand eines klinischen Falles die Ergebnisse einer Änderung der subjektiven Stellung und der Neuordnung des Genusses als Ergebnis des psychoanalytischen Aktes in der Behandlung eines psychotischen Kindes.

本文旨在傳達巴西圣保罗大学(USP) 心理學研究所下属的治療教育中心(NET)的实践經驗。NET的创立源於理療—教育領域的理論與臨床的發展，結合心理分析学與教育学，提供一系列针对自閉症和兒童精神病的治療方法。在此我們將介紹此做法之理論與臨床基礎，透過個案，分析治疗效果，这个案例是儿童精神病患者，通过心理医生的分析治疗，改变了病人的主观态度，和发泄方式，是治療教育中心的实践成果之一。.

Brain metastases in breast cancer: clinical and pathologic characteristics associated with improvements in survival.

BACKGROUND: As breast cancer patients live longer with control of systemic disease, survival after the diagnosis of brain metastases (BM) also appears to be improving. METHODS: The authors conducted a retrospective review of 112 breast cancer patients diagnosed with BM from 1997 to 2007 and correlated clinical and pathologic characteristics including hormone receptor (HR) and Her2/neu status with outcomes. FINDINGS: Median time to BM diagnosis (TTBM) was 38 months (range, 0-204 months). TTBM was shorter for patients with HR- versus HR+ disease (median 28.8 vs. 61.2 months, P < 0.001, Wilcoxon test). No difference in TTBM was observed for patients with HER2- versus HER2+ disease (median 37.4 vs. 34.9 months, P = 0.81). Median survival after the diagnosis of BM was 14.4 months. There was no significant difference in median survival after BM diagnosis for patients with HR+ versus HR- cancers (19.9 vs. 11.0 months, P = 0.18, log rank) or for patients with HER2+ versus HER2- disease (23.1 vs. 13.3 months, P = 0.11, log rank). Survival was significantly longer in patients with stable or responding systemic disease at BM diagnosis compared to patients with progressing systemic disease (31 vs. 6.3 months, P < 0.001). Multivariate analysis revealed that HR positivity, age <50, Karnofsky Performance Score (KPS) > or =80, and stable or responding systemic disease at BM diagnosis were associated with improved survival. INTERPRETATION: Subsets of patients with breast cancer BM are surviving longer. Control of systemic disease was most strongly associated with improved outcomes, and HER2/neu overexpression did not shorten survival after the diagnosis of BM.