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.

Development of a screening tool to improve the referral of patients with breast and gynecological cancer to outpatient palliative care.

OBJECTIVE: New strategies that allow timely referral to outpatient palliative care (PC) for cancer patients are sought. The authors developed a 16-item checklist tool with 3 categories of care priorities based on patients' physical functionality. To evaluate the potential clinical impact of the use of these criteria in patients with advanced breast and gynecological cancer (ABGC) seen at oncology clinics. METHODS: The study was divided into 2 phases. In Phase I, research nurse prospectively assessed the referral criteria among patients with ABGC who had not yet been referred to PC. The oncologists' (routine) referral rate was compared to the referral rate if the criteria were applied universally. In Phase II, we implemented routine screening with these referral criteria without automatic trigger. Patients not yet evaluated by PC were retrospectively evaluated regarding the rate of screening and how often they met criteria. RESULTS: Among the 120 patients evaluated in Phase I, oncologists referred 23 (19%) and the screening criteria identified another 82 (68%) who may benefit from PC, potentially increasing the PC referral rate by 3.2-fold. Patients would have been referred earlier using the criteria than based on oncologists' judgement (median survival 451 days vs. 178, p < 0.001). In Phase II, among the patients who were not yet receiving PC, 38.6% (97 of 251) met at least one criterion. CONCLUSION: The use of referral criteria has the potential to significantly increase the number of timely palliative care referral. Further research is needed to test the implementation of these criteria.

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.