How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

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.

Missed Opportunities of Integration of Palliative Care: Frequency, Causes, and Profile of Missed Visits in an Oncologic Palliative Care Outpatient Unit.

CONTEXT: Many patients with cancer are referred to palliative care (PC) outpatient clinics but do not attend consultations, which increases the difficultly of integrating PC in a timely manner. OBJECTIVES: To evaluate the frequency, causes, and profile of missing first-time consultations in a PC outpatient clinic. METHODS: Data from patients with advanced cancer who were scheduled for first-time visits to the PC outpatient clinic from September 2018 to August 2019 were analyzed. Missed consultation was defined as a nonperformed consultation with no prior notice of cancellation, and missed opportunity of palliative care (MOPC) was defined as a nonperformed consultation regardless of being notified in advance. The causes of the absence were identified by telephone using a standardized form. Logistic regression models were used to identify the profile of patients who have MOPC. RESULTS: About 1468 patients were scheduled for first-time visits to the PC outpatient clinic; missed consultation = 21.7% (n = 275) and MOPC = 32.5% (n = 478). Of the total number of patients who had MOPC, 86 (18%) were later seen in a median time (percentile p25-p75) of 29.5 days (range 7.0-66.5). The most common cause of MOPC was death before consultation (n = 92; 29.8%). Referral to PC using a standardized protocol (odds ratio 0.787; P = 0.044) and residence in distant cities (odds ratio 2.394; P < 0.001) were independently associated with MOPC. CONCLUSION: Approximately one-third of patients eligible for PC miss the opportunity to be included earlier; only 18% of them are consulted later. Use of standardized referral protocols may help to reduce these absence rates.