RESUMEN
INTRODUCTION: Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence-based models are lacking for the primary care setting. METHODS: We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person-family dyads from eight primary care practices. RESULTS: Mean patient age was 88.0 years, 85 (31.1%) were Black/Latino; 189 (69.2%) had moderate-to-severe cognitive impairment. Most (101/145; 69.6%) intervention dyads engaged in ACP. At follow-up, no treatment effect was observed for care partner-reported quality of communication about end-of-life care at 6 or 12 months, but intervention patients reported better quality of communication about end-of-life care at 12 months. Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and increased completion of key aspects of ACP. DISCUSSION: SHARE supported key aspects of ACP processes and communication about end-of-life care. HIGHLIGHTS: Primary care-based models of ACP for persons with dementia are lacking. Involving persons with cognitive impairment in remote ACP is feasible with care partner involvement. Results indicate benefit for aspects of ACP processes and communication about end-of-life care.
RESUMEN
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.
Asunto(s)
Planificación Anticipada de Atención , Lista de Verificación , Disfunción Cognitiva , Humanos , Masculino , Femenino , Anciano de 80 o más Años , Disfunción Cognitiva/terapia , Reproducibilidad de los Resultados , Método Simple Ciego , Atención Primaria de Salud , Comunicación , AncianoRESUMEN
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.