Comprehension and Decision-Making Capacity Questionnaire About Palliative Care and Advance Care Planning: A Delphi Study.

Objective(s): To develop a questionnaire that assesses the level of comprehension and decision-making capacity of patients with breast cancer about palliative care and advance care planning. Methods: Questionnaire items were based on the scientific literature. Delphi Consensus, a three-round survey with experts (n = 14), evaluated the relevance, clarity, and redundancies of the items. A pretest with breast cancer patients (n = 15) evaluated whether they comprehended each item and identified doubts or discomforts. Results: The initial questionnaire was composed of 38 items. After the Delphi, 18 items were restructured, six were added, and 16 were removed. In the pretest phase, all items with the survey header, guidelines, and Likert model were evaluated. All items accomplished ≥80% cut-off score and were kept as in the original version. The final version of the questionnaire have 28 itens and five domains: determination, responsibility, independence, self-knowledge, and knowledge of reality. Conclusions: This study represents the first step in the development of a questionnaire that may be used in oncology clinical practice. The main findings revealed that Delphi and pretesting increased the quality of the questionnaire, making it compelling to assess breast cancer patients' comprehension and decision-making capacity about PC and ACP.

Impact of Palliative Care on Quality of End-of-Life Care Among Brazilian Patients With Advanced Cancers.

CONTEXT: Many patients with advanced cancer experience aggressive care during the end of life (EOL). Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients. OBJECTIVES: To evaluate the impact of PC on the reduction of aggressive measures at the EOL. METHODS: Longitudinal study analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality-of-care indicators at the EOL; that is, emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life, and place of death in hospital as well as the use of a composite score for aggressiveness of care. RESULTS: Of the 1284 patients, 832 (65%) received some aggressive measures in EOL care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%; P < 0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score ≥1: 87.4% vs. 52.8%; P < 0.001). Early PC was associated with less chemotherapy (P = 0.001) and fewer emergency department visits (P = 0.004) in the last 30 days of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at EOL care aggressiveness. CONCLUSION: Patients with an advanced cancer consultation by PC staff received less aggressive care at the EOL when compared with patients without PC.

Factors associated with palliative care referral among patients with advanced cancers: a retrospective analysis of a large Brazilian cohort.

PURPOSE: The purpose of the study is to estimate the proportion of patients who had access to palliative care (PC) and to identify the timing and factors associated with this access. METHODS: A retrospective longitudinal study that included patients who died of advanced cancer between the years of 2010 and 2014 was conducted. The proportion of patients who received PC consultations was compared during those years. Sociodemographic and clinical factors, the timing between first PC consultation and death (early, ≥ 3 months; late, < 3 months), and first PC consultation were assessed. RESULTS: Of the 1284 studied patients, 988 (76.9%) were referred to PC and 839 (65.3%) had a PC consultation. The proportion of patients who received late PC consultation increased between the years 2010 and 2014 (44.2 vs. 60.4%, p = 0.001). Multivariate analysis revealed that younger age (odds ratio (OR) = 0.98, p = 0.016) and gynecologic cancer (OR = 2.17, p = 0.011) were associated with a PC consultation. Upper gastrointestinal tract (GIT) cancer (OR = 2.42, p = 0.001) and hematologic malignancies (OR = 0.37, p = 0.001) were associated with late PC consultations. The median time interval between the first PC consultation and death was 2.66 months: timing differed significantly among cancer subtypes (p = 0.002). CONCLUSION: Most patients received PC consultation before death, and the number of patients with late consultation increased throughout the study. Patients with late referrals could have received PC earlier. The current findings suggest the need to standardize the referral criteria to optimize access to PC.