Advance Directive Documentation in a Huntington’s Disease Clinic: A Retrospective Chart Review

BACKGROUND: Advance care planning (ACP) benefits patients and caregivers, yet it is underutilized and little is known about ACP in Huntington’s disease (HD) clinics. This study sought to determine the percentage of charts with AD documentation within an HD clinic. METHODS: A retrospective chart review was conducted on a randomly selected sample of charts within an HD clinic. HD patients ≥18 y/o with a positive genetic test (≥40 CAG repeats) seen between January 2018 and June 2021 were included. Charts were reviewed for documentation of ADs either in provider notes or in the electronic medical records (EMR). RESULTS: Ninety-one charts were reviewed (n = 91). Twenty-two charts (24.2%) mentioned a completed AD within a provider’s note; however, only nine (9.9%) had an AD available in the EMR. Cognitive status, primary insurance type, presence of dysphagia, and stage of disease were associated with documentation of completed ADs within a provider’s note. DISCUSSION: The rate of completed ADs mentioned in a provider’s note (24.2%) was significantly lower than rates of AD completion in a previous study within the HD population (38%). Additional studies focused on improving rates AD completion are needed. HIGHLIGHTS: Most patients with Huntington’s disease do not have documentation of completed advance directives (ADs) within their medical chart. In a retrospective chart review 24.2% of patients seen in a specialty HD clinic had documentation of ADs in a provider’s note and 9.9% had ADs available within the EMR.