Objectives Prognostic awareness relates to patients' capacity to understand their prognosis and the likely illness trajectory. Based on the current evidence, accurate PA is associated with decrease in uncertainty, depresivity, and anxiety and with increase in quality of life. However, other studies found also negative associations of PA and quality of life and mental health. This systematic review synthesizes the available literature on factors associated with accurate prognostic awareness in patients with cancer. Methods Four databases were systematically searched for studies assessing prognostic awareness in patients with cancer. In these studies, we looked for factors positively or negatively associated with prognostic awareness. Included studies were critically appraised for methodological quality. Results We screened 28 078 studies and included 70. In these studies, 102 factors were found to be related to prognostic awareness positively or negatively. Identified factors were divided into seven groups: demographic factors, factors related to coping, health condition factors, psychological factors, factors associated with end‐of‐life care, factors related to communication, and factors related to relatives. Prognostic awareness differs according to age, personality, communication with doctor, disease stage, or being outpatient. For some factors such as depression, anxiety, or quality of life, higher level of these factors was found to be associated with accurate and inaccurate prognostic awareness. Conclusions Prognostic awareness is a complex phenomenon associated with various positive and negative associations for patients with cancer. Clinicians must consider individual preferences and values of patients and their families when discussing prognosis and must be prepared for potential adverse outcomes.
Delivering serious news presents a major challenge for clinical practice in pediatric oncology due to the complexity of the communication process and a number of aspects that influence how the serious news is delivered and received. This study aims to review and explore the aspects influencing the delivery of serious news in pediatric oncology from the perspective of physicians, parents, siblings and patients themselves. The MEDLINE, Embase, Scopus, Cochrane Library, PsycInfo and Medvik databases were systematically searched for relevant articles published from 1990 to 2017. Following the Preferred Reporting Items for Systematic Review and Meta-analysis extension for scoping reviews (PRISMA-ScR) guidelines, 36 original papers were included. Identified aspects of communication were categorized into six thematic groups: initial setting, physician’s approach, information exchange, parental role, illness related aspects and age of the ill child. The importance of the aspects is perceived differently by parents, patients, siblings and physicians. This scoping review highlights that delivering serious news requires an individualized approach towards the patient and the family. Ten key objectives built upon the results of the literature review offer guidance for daily clinical practice in communication with pediatric patients and their families.
Objective The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty‐four patients completed all three phases of data collection. Results Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non‐significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185–0.510). Conclusions Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.
Background Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusions Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.
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