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

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.

Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive impairment in primary care: Study protocol for a randomized controlled trial.

OBJECTIVE: Little is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, "Sharing Healthcare Wishes in Primary Care" (SHARE). PARTICIPANTS: Planned enrollment of 248 dyads of adults 80 years and older with possible cognitive impairment and their care partner, from primary care clinics at 2 Mid-Atlantic health systems. METHODS: The treatment protocol encompasses an introductory letter from the clinic; access to a designated facilitator trained in ACP; person-family agenda-setting to align perspectives about the family's role; and print education. The control protocol encompasses minimally enhanced usual care, which includes print education and a blank advance directive. Randomization occurs at the individual dyad-level. Patient and care partner surveys are fielded at baseline, 6-, 12-, and 24- months. Fidelity of interventionist delivery of the protocol is measured through audio-recordings of ACP conversations and post-meeting reports, and by ongoing monitoring and support of interventionists. OUTCOMES: The primary outcome is quality of end-of-life care communication at 6 months; secondary outcomes include ACP process measures. An exploratory aim examines end-of-life care quality and bereaved care partner experiences for patients who die by 24 months. CONCLUSIONS: Caregiver burden, clinician barriers, and impaired decisional capacity amplify the difficulty and importance of ACP discussions in the context of cognitive impairment: this intervention will comprehensively examine communication processes for this special subpopulation in a key setting of primary care. REGISTRATION: ClinicalTrials.gov: NCT04593472.

Fielding the quality of communication questionnaire to persons with cognitive impairment and their family in primary care: A pilot study.

BACKGROUND: The quality of communication (QOC) questionnaire has been widely used to assess foundational aspects of patient-clinician communication about end-of-life (EOL) care. However, this instrument has never before been fielded with primary care patients who have cognitive impairment and their caregivers, a population with unique communication needs. DESIGN: We report on baseline data from a completed pilot study and ongoing efficacy trial of advance care planning involving dyads of primary care patients ages 80 and older with cognitive impairment and their family care partners. Two QOC subscales assessed ratings of general communication and EOL care communication from 0 ("worst") to 10 ("best"). Due to challenges piloting the EOL subscale, we integrated skip logic to improve cognitive accessibility and measurement precision. Participants were first asked whether EOL communication occurred (yes/no); those responding affirmatively were subsequently asked to rate communication. We report experiences with EOL subscale adaptations from our ongoing trial (NCT04593472). RESULTS: Using the original instrument in our pilot (13 dyads), mean patient and family general communication ratings were similar (9.65 and 9.60, respectively), but EOL ratings diverged (4.23 and 5.88, respectively), and "Don't Know" comprised 5% of patient and 32% of family responses. Interviewers reported patient and family participants expressed confusion when asked to rate EOL communication behaviors that had not occurred. Using the adapted instrument in our efficacy trial (43 dyads), EOL communication behaviors were most often reported as not having occurred (76% of patient and 73% of family responses across all items). Mean patient and family EOL subscale ratings were similar (2.23 and 2.26) and responses of "Don't Know" were minimal (<1%). CONCLUSION: The original QOC EOL subscale involves rating conversations that rarely occur in primary care but are important for older adults with cognitive impairment. Subscale adaptations may reduce confusion and response uncertainty and improve measurement accuracy.