Changes in settings of care for patients with manifest Huntington's Disease
Creators: name: Ogilvie, Amy Catherine
Publisher: name: University of Iowa
Year: 2025
Subjects: Descriptive epidemiology
Health services
Healthcare utilization
Huntington's disease
public abstract

description: Background: Huntington’s disease (HD) is a progressive neurodegenerative disease where over time patients become reliant on others, often caregivers or aides, to assist them with many of their daily functions. This also results in the need for multiple different healthcare providers throughout the course of the disease. While prior studies have focused on describing the different types of services used and some clinical predictors of use, there is a lack of research understanding how sociodemographic, caregiver, and system-level factors, in combination with clinical factors, influence the accessibility and use of these services. Additionally, prior studies have been limited in their ability to account for the progressive nature of the disease over time.
description: Methods: Data from the Enroll-HD study were utilized to address the first two aims of this dissertation. In the first study, visits to a neurologist, general practitioner, emergency room, and inpatient stays among individuals with HD were evaluated by assessing trends in use over the course of the disease and identifying clinical, sociodemographic, and caregiver-related factors associated with use. In the second study, clinical, sociodemographic, and caregiver characteristics associated with the change in setting from care provided in the home to outside the home in individuals with HD were evaluated. Data from the Nationwide Inpatient Sample between the years 2007 and 2011 were utilized to address the third aim of this dissertation. In this study, discharges to hospice and other discharge dispositions were characterized for hospitalized patients with late-stage HD and clinical, sociodemographic, and system-level predictors of disposition were explored.
description: Results: The progression of healthcare visits over the course of the disease and factors associated with visits were described among 4,581 Enroll-HD participants and the transition of care from inside to outside the home was described among 9,003 Enroll-HD participants. Overall, trends in neurology, emergency, and inpatient visits remained constant over the majority of the disease duration. For the general practitioner visits, there was an increasing trend in use over the first 12 years of the disease. Higher depression scores and lower functional capacity were significantly associated with greater odds of utilizing emergency rooms and inpatient services and transitioning care outside the home. Non-neurologic comorbidities, including hypertension and diabetes, were significantly associated with greater odds of visiting a general practitioner. Living in rural areas compared to a city was associated with lower odds of having a neurologist visit and lower odds of transitioning care outside the home. Part-time caregiver employment status compared to full-time employment was associated with greater odds of visiting a general practitioner and having an inpatient stay and lower odds of a neurologist visit while having a caregiver living in the same house as the person with HD was associated with lower odds of transitioning care outside the home. Differences among discharge dispositions were described among 6,243 hospitalizations of patients with late-stage HD. Aspiration pneumonia and non-aspiration pneumonia were significantly associated with lower odds of discharge to hospice compared to death in hospital. Weight loss and palliative care consultation were significantly associated with greater odds of discharge to hospice compared to discharge home, to facility, and to other locations while depression was significantly associated with lower odds of discharge to hospice to discharge home, to facility, and to other locations.
description: Conclusions: Patients with HD and their families are reliant on many different types of healthcare services throughout the disease course to manage symptom burden and maintain quality of life. This research has identified clinical, sociodemographic, caregiver, and system-level factors associated with healthcare utilization and transitions of care for patients with HD as the disease progresses. These descriptive studies serve as the basis for future research to develop clinical tools or decision aids which help patients, families, and clinicians navigate decision-making throughout the disease course and clinical algorithms to aid clinicians prognosticate referrals for advance care planning in HD, while also informing healthcare policy that will improve access to cost-effective and quality clinical care and resources for patients with HD and their caregivers.