Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial

J Pain Symptom Manage. 2024 May 15:S0885-3924(24)00750-4. doi: 10.1016/j.jpainsymman.2024.05.002. Online ahead of print.

Abstract

Context: Advance care planning (ACP) is critical among primary care patients with cognitive impairment, but few interventions have tested ACP with this population.

Objective: Describe the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment, including inter-rater reliability, convergent validity, and overall fidelity using clinical trial data.

Design: SHARE is a multicomponent intervention inclusive of facilitated ACP conversations. From a two group, single blind, randomized controlled trial, recorded ACP conversations were rated for fidelity. 145 primary care patients and their care partners were randomized to receive the intervention. Participating patients were 80+ years, had a care partner, and indications of cognitive impairment. An ACP Fidelity Checklist was developed with three subscales: Meeting Set-Up; ACP Meeting Topics; and Communication Skills. Scores were converted to percentages (100% = perfect fidelity) with a target of ≥80% fidelity. A post-ACP meeting report completed by ACP facilitators was used to assess convergent validity of the checklist. Intra-class correlation (ICC) was to evaluate inter-rater reliability.

Results: ACP conversations averaged 33.6 minutes (SD = 14.1). The mean fidelity score across N = 91 rated meetings was 82.9%, with a range of 77.3%-90.6% for subscales. 63.7% of meetings achieved a rating of ≥80%. Cognitive function was positively associated with patient participation (rho = .59, P < 0.001). For checklist items, ICC scores ranged from 0.43-0.96. Post-ACP meeting form scores were correlated with the checklist Meeting Topics subscale (r = 0.36, P = 0.001).

Conclusions: Assessing the fidelity of ACP conversations involving primary care patients living with cognitive impairment and their care partners is feasible.

Keywords: Advance care planning; cognitive impairment; dementia; fidelity; primary care.