Inpatient gastrostomy in Huntington's disease: Nationwide analysis of utilization and outcomes compared to amyotrophic lateral sclerosis.

BACKGROUND: Huntington's disease (HD) causes dysphagia and dementia, both of which are risk factors for malnutrition. Gastrostomy is used to sustain enteral intake in neurodegenerative diseases and specifically improves outcomes in ALS, but its indications and outcomes in HD are understudied. OBJECTIVE: To explore the indications and outcomes for gastrostomy for HD. METHODS: We performed a retrospective cross-sectional analysis of all HD admissions in the National Inpatient Sample. Logistic regression models compared the patient- and hospital-level characteristics associated with gastrostomy placement in HD and the prevalence of associated diagnoses in HD vs. ALS gastrostomy patients. We also examined in-hospital mortality, length of stay (LOS), and discharge status. RESULTS: Between 2000 and 2010, 5.12% (n = 1614) of HD admissions included gastrostomy tube placement. Gastrostomy patients were more likely to be Black (adjusted odds ratio [AOR] 1.55, 95% CI: 1.09-2.21) and have Medicare coverage (AOR 1.43, 95% CI: 1.0-2.05). The most common comorbidities were aspiration pneumonia (34.1%), dementia (31.3%), malnutrition (30.3%), and dysphagia (29.5%). Dementia and delirium were associated with discharge type but not LOS. Aspiration pneumonia, sepsis, and Elixhauser comorbidity index were associated with LOS but not discharge type. Compared to 7908 ALS gastrostomy patients, those with HD more frequently had aspiration pneumonia (34.1% vs. 20.5%, p < 0.0001), sepsis (28.1% vs. 13.7%, p < 0.0001), prolonged LOS (OR 1.14, 95% CI: 1.02-1.28), and skilled nursing facility discharge (p < 0.0001, Wald chi square test). CONCLUSIONS: Gastrostomy is frequently performed in HD patients with dementia and aspiration pneumonia who are at increased risk for negative hospitalization outcomes.

The Oncology Nurse Navigator as "Gate Opener" to Interdisciplinary Supportive and Palliative Care for People with Head and Neck Cancer.

BACKGROUND: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences. OBJECTIVES: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer. DISCUSSION: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation. CONCLUSIONS: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.

Addressing the Value of Multidisciplinary Clinical Care in Huntington's Disease: A Snapshot of a New Huntington's Disease Center.

BACKGROUND: Clinical care for Huntington's disease (HD) is often provided in experienced centers that provide multidisciplinary care. However, the value of these centers and their uptake by HD families remain unknown. OBJECTIVE: To describe the services provided by a new HD center, including estimates of capture of the population served. METHODS: Retrospective review of a HD Center launched in 2015, including quantitative and qualitative data on clinic visits, demographic and clinical data. RESULTS: We observed a rapid and ongoing growth on the annual number of clinic encounters, with high demand for in-clinic multidisciplinary care. Using census data and estimates of HD prevalence, we determined that we served about 20% of local patients with HD. Most HD patients received pharmacological treatment for psychiatric symptoms, and over half were treated for chorea. About 25% of new HD diagnoses were on patients without family history of HD. Finally, the demand for predictive testing in at risk individuals significantly increased following the press release reporting the successful completion of the Ionis-HTTRx (RG 6042) trial. CONCLUSIONS: This report indicates a high demand for multidisciplinary care by HD families, supporting its value, providing a snapshot of the organization and function of a single center. Furthermore, it demonstrates how dissemination of news related to research advances influence clinical behavior. Reporting similar information from other HD centers to would provide us with a more global view of the status of HD care across multiple geographical areas.