Rush University Medical Center, Chicago, IL, US.
Tremor Other Hyperkinet Mov (N Y). 2022 Feb 1;12:4. doi: 10.5334/tohm.676. eCollection 2022.
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.
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).
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.
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.
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.
预先医疗指示（advance care planning，ACP）对患者和护理人员都有益，但它的使用率较低，人们对亨廷顿病（Huntington's disease，HD）诊所中的 ACP 知之甚少。本研究旨在确定 HD 诊所中记录 ACP 的病历比例。
对 HD 诊所中随机抽取的样本病历进行回顾性病历审查。纳入标准为 18 岁及以上、经基因检测阳性（≥40 个 CAG 重复）、于 2018 年 1 月至 2021 年 6 月期间在该诊所就诊的 HD 患者。查阅病历，查看在医生记录或电子病历（electronic medical records，EMR）中是否有关于 ACP 的记录。
共审查了 91 份病历（n=91）。22 份病历（24.2%）在医生记录中提到了已完成的 ACP，但只有 9 份（9.9%）在 EMR 中有 ACP。认知状态、主要保险类型、是否存在吞咽困难以及疾病分期与医生记录中完成的 ACP 记录有关。
医生记录中提到的已完成 ACP 的比例（24.2%）明显低于之前在 HD 人群中进行的研究中的 ACP 完成率（38%）。需要进一步开展研究以提高 ACP 的完成率。
大多数 HD 患者的病历中没有记录完成的预先医疗指示（advance care planning，ACP）。在一项回顾性病历审查中，在专门的 HD 诊所就诊的患者中，24.2%的患者在医生记录中有 ACP 记录，9.9%的患者在 EMR 中有 ACP 记录。
