Background: Few studies have tested ACP approaches tailored to persons living with ADRD and their families in primary care settings. The Sharing Health Care Wishes in Primary Care (SHARE) trial aims to fill this gap by evaluating the efficacy of a manualized ACP intervention designed to improve communication between primary care clinicians and older patients with, or at risk of, ADRD and the care partner who helps them the most with medical decision-making. This study describes the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment.
Design and Participants: From a two group, single blind, randomized controlled trial, recruited participants from primary care clinic. Participants were older (80+ years) primary care patients and their families. The study team recruited a sample of 273 person-family dyads (145 allocated to the SHARE intervention arm; 128 allocated to control) consisting of the patient and the person who helps them most with medical decision-making (i.e., their care partner, typically a family member). SHARE ACP facilitators are trained in the Respecting Choices® protocol, an evidence-supported approach for conducting ACP meetings with individuals living with serious or life-threatening diseases. 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.
Results: Fidelity ratings tended to improve over time, suggesting a facilitator experience effect. Meeting duration was positively correlated with the overall SHARE ACP Fidelity Checklist score. Additionally, the overall and subscale scores of the SHARE ACP Fidelity Checklist were not statistically associated with patient cognitive function, or whether an advance directive had previously been completed (P > 0.05). The patient's cognitive status was correlated with levels of participation in ACP meetings: patients with better cognitive function had greater levels of participation. Care partners of patients with worse cognitive function had greater levels of participation.
Commentary: Longer meetings may allow for better communication. A non-trivial 36.3% of meetings fell short of the 80% fidelity target. Given the observed facilitator experience effect, one explanation for some meetings falling short of the target is that SHARE experienced significant ACP facilitator turnover over the course of the project.
Bottom Line: Having an experienced and consistent individual who can perform ACP planning, would increase fidelity scores. Fidelity scores were increased in patient having a caregiver if they had more severe cognitive impairment. The SHARE ACP checklist would be feasible to use in primary care setting.
Source: Cagle, J. G., Reiff, J. S., Smith, A., Echavarria, D., Scerpella, D., Zhang, T., Roth, D. L., Hanna, V., Boyd, C. M., Hussain, N. A., & Wolff, J. L. (2024). Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial. Journal of pain and symptom management, 68(2), 180–189. https://doi.org/10.1016/j.jpainsymman.2024.05.002
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