Ogilvie Amy C, Carnahan Ryan M, Mendizabal Adys, Gilbertson-White Stephanie, Seaman Aaron T, Chrischilles Elizabeth A, Schultz Jordan L
Division of General Internal Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora.
Department of Epidemiology, University of Iowa, Iowa City.
Neurol Clin Pract. 2025 Jun;15(3):e200471. doi: 10.1212/CPJ.0000000000200471. Epub 2025 Apr 9.
There is a need to understand how different factors influence health care utilization for patients with Huntington disease (HD) to maximize benefits of primary and specialty care while minimizing need for costly emergency visits or hospitalizations. The primary objective of this study was to characterize how settings where patients with HD in Northern America receive care change throughout the disease course and determine whether the likelihood of different types of service utilization is influenced by clinical, sociodemographic, and caregiver characteristics.
Data from the Enroll-HD study and joinpoint regression were used to assess trends in neurology visits, general practitioner visits, emergency department visits, and inpatient stays over the disease course and as a function of total functional capacity. Generalized estimating equation models were then used to identify factors associated with use of these different services in the 6 months before their study visit.
Visits from 1,631 participants in the Northern America region from the Enroll-HD study were included in this study. Trends in neurology, emergency, and inpatient visits remained constant over most of the disease duration. For the general practitioner visits, there was an increasing trend in use throughout the course of disease. Clinical factors, such as psychiatric symptoms, functional ability, and comorbidities, were associated with use of multiple types of health care services. Sociodemographic and caregiver factors, such as race or ethnicity, urban or rural residence, and caregiver employment status, were also associated with use of multiple health care services.
Clinical, sociodemographic, and caregiver-related factors were all associated with outpatient, emergent, and inpatient care. This work identifies multiple avenues for future research on how to improve access to and quality of care for patients with HD, specifically relating to reducing the need for emergency visits and inpatient stays and promoting collaboration among primary and specialty clinicians.
有必要了解不同因素如何影响亨廷顿病（HD）患者的医疗保健利用情况，以便在将初级和专科护理的益处最大化的同时，尽量减少对昂贵的急诊就诊或住院治疗的需求。本研究的主要目的是描述北美HD患者接受护理的场所如何在整个疾病过程中发生变化，并确定不同类型服务利用的可能性是否受到临床、社会人口统计学和护理人员特征的影响。
来自“注册HD研究”的数据和连接点回归被用于评估在疾病过程中以及作为总功能能力函数的神经科就诊、全科医生就诊、急诊科就诊和住院情况的趋势。然后使用广义估计方程模型来识别在研究就诊前6个月内与这些不同服务使用相关的因素。
本研究纳入了来自“注册HD研究”北美地区的1631名参与者的就诊数据。在疾病的大部分持续时间内，神经科、急诊科和住院就诊的趋势保持不变。对于全科医生就诊，在疾病过程中使用呈增加趋势。临床因素，如精神症状、功能能力和合并症，与多种类型的医疗保健服务使用相关。社会人口统计学和护理人员因素，如种族或族裔、城乡居住情况以及护理人员就业状况，也与多种医疗保健服务使用相关。
临床、社会人口统计学和与护理人员相关的因素均与门诊、急诊和住院护理相关。这项工作确定了未来研究的多个途径，即如何改善HD患者的医疗服务可及性和护理质量，特别是减少急诊就诊和住院的需求，以及促进初级和专科临床医生之间的合作。
