Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA.
Department of Psychology and Human Development, Vanderbilt University Medical Center, Nashville, TN, USA.
J Huntingtons Dis. 2021;10(2):313-322. doi: 10.3233/JHD-200460.
Safer-at-home orders during the COVID-19 pandemic altered the structure of clinical care for Huntington's disease (HD) patients. This shift provided an opportunity to identify limitations in the current healthcare infrastructure and how these may impact the health and well-being of persons with HD.
The study objectives were to assess the feasibility of remote healthcare delivery in HD patients, to identify socioeconomic factors which may explain differences in feasibility and to evaluate the impact of safer-at-home orders on HD patient stress levels.
This observational study of a clinical HD population during the 'safer-at-home' orders asked patients or caregivers about their current access to healthcare resources and patient stress levels. A chart review allowed for an assessment of socioeconomic status and characterization of HD severity.
Two-hundred and twelve HD patients were contacted with 156 completing the survey. During safer-at-home orders, the majority of HD patients were able to obtain medications and see a physician; however, 25% of patients would not commit to regular telehealth visits, and less than 50% utilized an online healthcare platform. We found that 37% of participants were divorced/single, 39% had less than a high school diploma, and nearly 20% were uninsured or on low-income health insurance. Patient stress levels correlated with disease burden.
A significant portion of HD participants were not willing to participate in telehealth services. Potential explanations for these limitations may include socioeconomic barriers and caregiving structure. These observations illustrate areas for clinical care improvement to address healthcare disparities in the HD community.
在 COVID-19 大流行期间，“居家安全”令改变了亨廷顿病（HD）患者的临床治疗结构。这一转变提供了一个机会，可以发现当前医疗保健基础设施的局限性，以及这些局限性如何影响 HD 患者的健康和福祉。
本研究旨在评估远程医疗在 HD 患者中的可行性，确定可能解释可行性差异的社会经济因素，并评估“居家安全”令对 HD 患者压力水平的影响。
在“居家安全”令期间，对临床 HD 人群进行了这项观察性研究，询问患者或护理人员他们目前获得医疗资源的情况和患者的压力水平。通过病历回顾，评估了社会经济状况，并对 HD 严重程度进行了特征描述。
共联系了 212 名 HD 患者，其中 156 名完成了调查。在“居家安全”令期间，大多数 HD 患者能够获得药物并看医生；然而，25%的患者不愿意定期进行远程医疗访问，不到 50%的患者使用在线医疗平台。我们发现，37%的参与者离婚/单身，39%的参与者没有高中文凭，近 20%的参与者没有保险或享受低收入健康保险。患者的压力水平与疾病负担相关。
相当一部分 HD 参与者不愿意参与远程医疗服务。这些限制的潜在解释可能包括社会经济障碍和护理结构。这些观察结果说明了需要改善临床护理，以解决 HD 社区中的医疗保健差异问题。
