Caregiving Burden and Wellbeing From the Meta-LARC Cluster Randomized Trial of Advance Care Planning in Primary Care for Patients With Serious Illness.

Abstract

Care partners (CPs) are informal or family caregivers who help family or friends manage health care and provide a wide range of assistance. Advance care planning (ACP) supports CPs by clarifying patients' goals and values. The Meta-LARC Advance Care Planning trial randomized primary care practices to team-based or individual clinician-focused versions of an ACP program to determine if team-based approaches would increase ACP and improve patient outcomes. CPs were included, but not required, in ACP conversations and follow-up; CP outcomes were secondary and exploratory. CPs completed initial, 6-, and 12-month questionnaires, including the Zarit Burden Interview-12, PROMIS-29, and assessed if care matched patient preferences. 171 CPs participated and completed initial and 6- or 12-month follow-up questionnaires. The PROMIS-29 scale scores were different only for the depression scale at the 6- and 12-month follow-ups: the mean score for CPs in the individual clinician-focused arm was better than the team-based CPs (50.3 vs 49.2, <i>P</i> = .023), though this difference is not considered clinically meaningful. In both team and clinician practices, CPs who rated care more in line with patient's goals were less likely to report moderate or higher levels of burden (39.4% vs 59.5%, <i>P</i> = .0001) and reported significantly lower levels of anxiety, depression, sleep disturbance, and pain. We found no significant differences in most CP outcomes when serious illness conversations with patients in primary care are implemented using a team-based versus individual clinician-focused approach. However, when care matched what was important to patients, CP outcomes were better.