Advance care planning in primary malignant brain tumors: Knowledge, experiences, and preferences of patients and caregivers

TL;DR

This study explores how patients with brain tumors and their caregivers engage in advance care planning, finding a gap between willingness and knowledge.

Contribution

The study provides new insights into the knowledge, experiences, and preferences of brain tumor patients and caregivers regarding advance care planning.

Findings

Patients were more willing than caregivers to participate in treatment decisions.

Low knowledge about ACP exists, but willingness to participate is high.

Caregivers prefer to start ACP at diagnosis more than patients, while patients prefer to start at recurrence.

Abstract

Advance care planning (ACP) can help patients with primary malignant brain tumors to align treatments with their preferences. However, insights into patients’ and caregivers’ engagement with ACP remain scarce. This study elaborates on their knowledge, experiences, and preferences concerning ACP.

This was a secondary analysis of data from the “National Survey on the Needs and Support of Brain Tumor Patients and Caregivers” in Japan. Responses from 128 patients and 106 caregivers were included. Descriptive statistics, logistic regression, and qualitative analyses of free-text responses were performed.

Patients were more willing than caregivers to participate in decisions regarding their treatment (96.8% vs. 82.5%, P < .001). Knowledge about ACP was low in both groups (12.3% of patients and 10.7% of caregivers), but willingness to participate in ACP was high (68.9% of patients and 65.9% of caregivers). Preference to initiate ACP at diagnosis was low in both groups, with caregivers showing a higher preference than patients (29.0% vs. 11.1%). A greater percentage of patients preferred to start ACP at recurrence than caregivers (47.0% vs. 18.3%, P < .0001). Frequent family discussions were significantly associated with actual experiences of ACP (OR = 3.7, 95% CI = 1.6–9.3, P = .0019).

The mismatch between respondents’ willingness to participate in ACP and their knowledge and experience reveals a need to increase ACP awareness. Differences in ACP preferences between patients and their caregivers may indicate the need for improved communication strategies by healthcare professionals. Further research is needed to understand these differences.

Figures