Preferências de pessoas idosas pela informação prognóstica numa situação de doença grave, com menos de um ano de vida / Older people's preferences for prognostic information in a situation of serious illness with less than a year to live

Resumo O objetivo deste estudo foi determinar as preferências de pessoas idosas, residentes na comunidade, pela divulgação de informações relativas ao tempo de vida limitado, sintomas e problemas, e opções disponíveis para cuidados numa situação de doença grave, com menos de um ano de vida; e identificar os fatores associados com a preferência pela informação sobre prognóstico de vida limitado. Foi aplicado a versão brasileira do questionário sobre Preferências e Prioridades para os Cuidados de Fim de Vida (PRISMA), por meio de entrevista face-a-face, a 400 pessoas idosas, residentes na cidade de Belo Horizonte, Minas Gerais, Brasil. Os principais resultados indicam que: 74.0% preferem ser informados sobre o tempo de vida limitado, 89.3% sobre os sintomas e problemas e 96.3% acerca das opções de cuidados. Os fatores associados à preferência pela informação sobre prognóstico de vida limitado foram: gênero (mulheres: OR=0.446, 95% IC:0.269-0.738) e local menos preferido de morte (casa de um familiar ou amigo: OR=2.423, 95% IC:1.130-5.198). Esses resultados mostram que a maioria das pessoas idosas deseja ser informada numa situação de doença avançada, com menos de um ano de vida. Os profissionais de saúde precisam estar preparados para antecipar notícias sobre o prognóstico de vida limitado e a doença.

Abstract This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.

To tell or not: parental thoughts on disclosure of urologic surgery to their child

Literature pertaining to surgical disclosure to the pediatric patient is lacking. We hypothesized parents would find it difficult to disclose urologic surgery to a child.

O fator de impacto influencia na ética das instruções aos autores de uma revista? / Does impact factor influence the ethics of the instructions provided to journal authors?

OBJETIVO: Verificar se o fator de impacto de um periódico é um mecanismo modificador dos quesitos éticos descritos nas instruções aos autores de revistas médicas nacionais. MÉTODOS: Foram selecionadas 48 revistas divididas em dois grupos: grupo com fator de impacto (n = 24), e grupo sem fator de impacto (n = 24). Foi comparada a quantidade de quesitos éticos entre os dois grupos baseados num protocolo de pesquisa próprio, variando de zero a seis pontos, analisando a presença de aprovação por Comitê de Ética em Pesquisa; citação de que a pesquisa segue os preceitos da Declaração de Helsinque e as normas da resolução 196/96; uso de Termo de Consentimento Livre e Esclarecido; informação sobre os conflitos de interesse dos Pesquisadores; e solicitação para que os estudos clínicos sejam cadastrados no Registro Brasileiro de Estudos Clínicos. RESULTADOS: A média da pontuação do grupo com fator de impacto foi significativamente maior que o grupo sem fator de impacto (3,12 ±1,03 vs. 2,08 ±1,64, p = 0,0121). Quando cada quesito ético foi comparado entre os grupos, houve diferença significativa apenas entre a solicitação do TCLE e o conflito de interesses (p < 0,05). CONCLUSÃO: O fator de impacto é um fator determinante na ética contida nas instruções aos autores das revistas científicas, mostrando que as revistas de maior qualidade buscam artigos com melhores desenhos e que sejam criteriosos quando do início da pesquisa.

OBJECTIVE: Verify whether a journal's impact factor is a mechanism that modifies the ethi cal requirements described in the instructions provided to authors of articles published in Brazilian medical journals. METHODS: 48 selected journals were divided into two groups: impact-factor (n = 24), and no impact-factor (n = 24). The number of ethical requirements was compared between both groups based on a specific research protocol, ranging from zero to six points, analyzing the presence of an approval by a research ethics committee; reference to the fact that the research follows the precepts of the Declaration of Helsinki and the rules of Resolution 196/96; use of an informed consent; information about the authors' conflicts of interest; and a request for registration of clinical trials in the Brazilian Clinical Trials Registry. RESULTS: The average score of the impact-factor group was significantly higher than that of the no-impact-factor group (3.12 ± 1.03 vs. 2.08 ± 1.64, p = 0.0121). When each ethical requirement was compared between the groups, there was significant difference only between the requirement of an informed consent and the disclosure of conflicts of interest (p < 0.05). CONCLUSION: The impact factor is a determinant factor on the ethics included in the instructions to authors of articles in scientific journals, showing that higher-quality journals seek better-designed articles that are conscientious at the beginning of the research.

Disclosure of the diagnosis of Alzheimer's disease: caregivers' opinions in a Brazilian sample / A revelação do diagnóstico de doença de Alzheimer: opiniões de cuidadores em uma amostra brasileira

BACKGROUND: Disclosure of the diagnosis of Alzheimer's disease (AD) remains a contentious issue, and has been little studied in developing countries. OBJECTIVE: To investigate the influence of socio-demographic factors and the experience of being a caregiver on opinion about disclosing AD diagnosis to the patient in a Brazilian sample. METHOD: Caregivers of 50 AD patients together with 50 control participants that did not have the experience of being a caregiver of AD patient were interviewed using a structured questionnaire. RESULTS: Most of the participants (73.0 percent) endorsed disclosure of the diagnosis, while caregivers were less prone to disclose (58.0 percent) than controls (88.0 percent; p=0.0007). Logistic regression confirmed that only the experience of being a caregiver was associated with a lesser tendency for disclosure endorsement. CONCLUSION: The majority of participants was in favor of disclosing the diagnosis, but caregivers were less willing to disclose the diagnosis to the AD patient.

FUNDAMENTO: A revelação do diagnóstico de doença de Alzheimer (DA) tem sido tema polêmico e pouco estudado em países em desenvolvimento. OBJETIVO: Investigar a influência de fatores sócio-demográficos e a experiência de ter sido cuidador na opinião sobre a revelação do diagnóstico em uma amostra brasileira. MÉTODO: Cuidadores de 50 pacientes com DA e 50 indívíduos controle que não tinham tido experiência como cuidadores de pacientes com DA foram entrevistados com o uso de um questionário estruturado. RESULTADOS: A maioria dos participantes (73,0 por cento) manifestou-se a favor da revelação diagnóstico aos pacientes, mas cuidadores foram menos favoráveis (58,0 por cento) que controles (88,0 por cento; p=0,0007). Regressão logística demonstrou que apenas a experiência como cuidador foi associada com menor tendência a apoiar a revelação do diagnóstico. CONCLUSÃO: A maioria dos participantes foi a favor da revelação do diagnóstico ao paciente, mas aqueles com experiência como cuidadores de pacientes com DA foram menos favoráveis.

¿Explicitan los autores de la Revista Médica de Chile sus fuentes de financiamiento? / Disclosure of financial sources and conflicts of interest among research articles published in Revista Médica de Chile

Background: Financial relationships between the industry and researchers have raised concerns about the existence of conflicts of interest that could influence the scientific validity of the studies. Aim: To determine the financial sources of research articles published in the Revista Médica de Chile during a five-year period. Material and Methods: Retrospective analysis of all articles classified as ôresearch articlesõ, published in this journal between years 2001-2005, identifying the funding source and the existence of a declaration of conflicts of interest by the authors. Results: Two hundred seventeen out of 519 research articles published in the period (42 percent) had an explicit financial source disclosed. Of these, 28 percent were funded by internal sources, 36 percent by Fondo Nacional de Desarrollo Científico y Tecnológico and 36 percent by other sources. Twenty-six studies (5 percent) received funding from the industry. In only five of these, the authors explicity declared the absence of conflict of interest. Among the studies that did not disclose any financial source, one third required some funding to be carried out. Conclusions: Forty two percent of research articles published in the last five years did not specify the financial source. Those that did specify a funding source were mainly supported by non-profit agencies including university centers and governmental funds. This is in contrast with international reports that evidence an important financial support from the industry. Only a minority of the authors sponsored by the industry declared absence of conflict of interest.

Factors associated with non-disclosure of HIV infection status of new mothers in Bangkok.

The objective of this study was to estimate HIV disclosure rates and identify factors that predict non-disclosure in Thai women who tested HIV positive during pregnancy or at delivery. This was a cohort study evaluating the implementation of prevention of mother-to-child HIV transmission programs at two Bangkok hospitals in 1999-2003. All HIV-infected women who delivered during the study period were enrollment eligible. Thai-language questionnaires were used to collect baseline data before discharge from the hospital. At the 1 and 4 month follow-up visits, women were asked if they had disclosed their HIV status. Of the 799 women who enrolled, 647 (81.0%) completed follow-up at 1 and 4 months. Four hundred fifty-three (70.0%) women disclosed their status by 1 month. Of the 194 women who had not disclosed by 1 month, 48 (24.7%) had disclosed their status by 4 months. An independent increased odds of non-disclosure by 1 month was associated with not having a partner tested for HIV (OR=5.83, 95% CI=3.19-9.08) or not knowing if the partner was ever tested for HIV (OR=1 3.02, 95% Cl=5.26-32.28), first learning of HIV positive status during delivery (OR=6.84, 95% CI=2.36-19.81) or after delivery (OR=3.14, 95% CI=1.57-6.26) and having >2 lifetime sexual partners (OR=1.71, 95% CI=1.04-2.82). Not living with a partner every day was associated with non-disclosure by 4 months in those women who had not disclosed by 1 month (OR=2.28, 95% CI=1.43-3.64). Despite high rates of disclosure by 1 month, 22.6% of women still had not disclosed their HIV status to their partners by 4 months. The benefits of disclosure warrant effective interventions targeted at women at risk for non-disclosure.