Association between prognostic awareness and quality of life in patients with advanced cancer.

PURPOSE: Despite the current guidelines supporting open communication about serious news, the evidence about the impact of prognostic awareness on the quality of life in cancer patients is not clear. The aim of this study was to assess the association between quality of life and prognostic awareness in patients with advanced cancer. METHODS: This was a cross-sectional study which involved patients (n = 129) with incurable advanced cancer (estimated by oncologist using 12-month surprise question). Data were collected at oncology departments at 3 hospitals using structured interview in which patients were asked about their quality of life (using Integrated Palliative Outcome Scale-IPOS and a single-item global measure), prognostic awareness, information needs and demographics. RESULTS: Only 16% of the sample was completely aware of prognosis and 57% was partially aware. Accurate prognostic awareness was significantly associated (p = 0.02) with lower level of quality of life between (when measured by both the IPOS and the single-item scale) patients with accurate prognostic awareness (M = 37.1; 10.4) and partially aware (M = 31.9; 9.1) and unaware patients (M = 30; 7.4). Detailed analysis showed that significant difference between groups was found only for physical symptoms subscales (p = 0.002), not for emotional and communication subscales. CONCLUSION: Prognostic awareness was found to be negatively associated with physical domain of quality of life, but not with emotional and communication domains. More research is needed on personality factors that might influence the development of prognostic awareness and quality of life.

Views of patients with advanced disease and their relatives on participation in palliative care research.

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.

Prognostic awareness in advanced cancer patients and their caregivers: A longitudinal cohort study.

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.

Optimal participation in decision-making in advanced chronic disease: perspectives of patients, relatives and physicians.

BACKGROUND: Making decisions about health care issues in advanced illness is difficult and the participation of patients and relatives is essential. Most of the studies on shared decision-making focus on the interaction between patient and physician (dyadic interaction), while the role of relatives in triadic decision-making remains less explored. The aim of the study was to investigate the perceived importance of the role of the patient, the physician and the relative in the decision-making from their respective perspectives. METHODS: Patients (n=154) with advanced disease, their relatives (n=95) and physicians (n=108) were asked to rank the importance of their roles on the scale from 0 to 10. Differences between respondent groups were examined by ANOVA. A typology of answers was constructed for dyadic and triadic relations and analyzed by descriptive statistics and the chi-square test. RESULTS: Physicians rated the importance of patients' role in decision-making significantly higher [mean 9.31; 95% confidence interval (CI): 9.07-9.55] than did patients themselves (mean 7.85; 95% CI: 7.37-8.32), while patients and relatives rated higher the importance of the physicians' role (mean 9.29; 95% CI: 8.98-9.59 and mean 9.20; 95% CI: 8.96-9.45, respectively) than did physicians themselves (mean 8.35; 95% CI: 0.06-8.65). In the analysis of the patient-physician dyadic interaction, patients ranked their role as equally important (44.1%) or more important (11.2%) than the role of physicians. Physicians (56.5%) thought patients should play a more important role. When relatives were included in the analysis, patients either preferred equal role of the three actors (30.2%) or prioritized the role of the physician and the relatives (16.8%), while physicians and relatives prioritized the role of the patient (54.6% and 29.0%, respectively). All results were statistically significant (P<0.05). CONCLUSIONS: Physicians and relatives tend to accentuate the active role of patients, while patients mostly prefer shared decision-making. Physicians seem to underestimate the importance of the role of relatives, compared to patients and relatives for whom the participation of relatives in the decision-making is of greater importance. A triadic decision-making model that acknowledges the importance of all three actors should be implemented in decision-making process in advanced illness.

Patients' Autonomy at the End of Life: A Critical Review.

CONTEXT: The predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients. OBJECTIVES: This review aimed to develop a theoretical structural model of autonomy at the end of life based on patients' end-of-life care preferences. METHODS: In this review, we used systematic strategy to integrate and synthesize findings from both qualitative and quantitative studies investigating patients' view on what is important at the end of life and which factors are related to autonomy. A systematic search of EMBASE (OVID), MEDLINE (OVID), Academic Search Complete (EBSCO), CINAHL (EBSCO), and PsycINFO (EBSCO) was conducted for studies published between 1990 and December 2015 providing primary data from patients with advanced disease. RESULTS: Of the 5540 articles surveyed, 19 qualitative and eight quantitative studies met the inclusion criteria. We identified two core structural domains of autonomy: 1) being normal and 2) taking charge. By analyzing these domains, we described eight and 13 elements, respectively, which map the conceptual structure of autonomy within this population of patients. CONCLUSION: The review shows that maintaining autonomy at the end of life is not only a concern of making choices and decisions about treatment and care but that emphasis should be also put on supporting the patients' engagement in daily activities, in contributing to others, and in active preparation for dying.