Health Care Utilization in the Last Year of Life in Parkinson Disease and Other Neurodegenerative Movement Disorders.

Background and Objectives: Neurodegenerative movement disorders are rising in prevalence and are associated with high health care utilization. Generally, health care resources are disproportionately expended in the last year of life. Health care utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood. The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care affected acute care utilization and place of death. Methods: We conducted a retrospective cross-sectional study including health system administrative data in Alberta, Canada, from 2011 to 2017. Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit admissions, and outpatient generalist and specialist visits. Diagnoses were classified by 10th revision of the International Classification of Diseases codes. Stata 16v was used for statistical analyses. Results: Among 1439 individuals (60% male), Parkinson disease (n = 1226), progressive supranuclear palsy (n = 78), multiple system atrophy (n = 47), and Huntington disease (n = 58) were the most common diagnoses. The most frequent place of death was in hospital (45.9%), followed by long-term care (36.3%), home (7.9%), and residential hospice (4.0%). Most (64.2%) had >1 ED visit, and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to ICU. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (OR, 2.49, 95% confidence interval [CI], 1.48-4.21, p < 0.001) and were with a longer duration of home care support (OR, 1.0007, 95% CI, 1.0004-1.0009, p < 0.001). Discussion: There are high rates of in-hospital death and acute care utilization in the year before death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.

Innovative Urgent Care for the Palliative Patient at Home.

Palliative and end-of-life patients in their homes are at risk of developing symptom crises requiring urgent care. The usual care for these patients involves transport to an Emergency Department (ED) despite the preference of most palliative patients to stay home. The objective of this initiative was to develop an innovative strategy to provide collaborative care in the home to alleviate symptoms and avoid transport. A partnership was created among Emergency Medical Services and Community Care staff, physicians, and leaders to enable patients to stay at home with existing resources during symptom crisis. As a result of the initiative, patients were able to stay at home more frequently. When patients required transport to the ED, it occurred after attempted symptom management in the home. A total of 110 calls were tracked in the first 18 months of the initiative. Of those, 61% ended with the patient staying home, in alignment with their preferred place of care at the end of life. A collaborative approach by care providers in the community enabled patients to stay home despite symptom crisis near the end of life.

Conversion of Karnofsky Performance Status (KPS) and Eastern Cooperative Oncology Group Performance Status (ECOG) to Palliative Performance Scale (PPS), and the interchangeability of PPS and KPS in prognostic tools.

AIM: The aim of our study was to assess whether the Karnofsky Performance Status (KPS), the Eastern Cooperative Oncology Group (ECOG) Performance Status, and the Palliative Performance Scale (PPS) are interchangeable individually or within two prognostic tools: the Palliative Prognostic Score (PaP) and the Palliative Prognostic Index (PPI). METHODS: We performed a subset analysis of a prospective comparative study of functional and prognostic tools and clinician prediction of survival. We studied 955 patients with advanced life-limiting illnesses (cancer and noncancer) in the acute care and community settings. We used a descriptive statistical model and Spearman's rank correlation to assess these interchangeabilities. RESULTS: There is a direct positive linear relationship between the KPS and the PPS, and a direct negative linear relationship between these tools and the ECOG. Exchange of the KPS and the PPS was possible within the PaP and the PPI. CONCLUSION: The PPS and the KPS can be used interchangeably as functional tools and within prognostic tools. The ECOG is interchangeable with the PPS and the KPS, but this interchangeability is population-specific.

Characterization of chemosensory alterations in advanced cancer reveals specific chemosensory phenotypes impacting dietary intake and quality of life.

CONTEXT: Taste and smell (chemosensory) alterations are common and distressing among advanced cancer patients, but their specific nature is poorly described and seldom linked to dietary intake. Details of altered chemosensory perception may help to explain food intake behaviors. OBJECTIVES: Our goal was to characterize chemosensory alterations and their relationship with dietary intake and quality of life (QOL). METHODS: Adult advanced cancer patients (n=192) completed a chemosensory self-assessment questionnaire to characterize changes in their sense of smell and four basic tastes (sweet, sour, salty, and bitter) since the onset of cancer, three-day food record, and QOL questionnaire. RESULTS: Patients experienced either no alteration in any basic tastes and sense of smell sensations (26% of patients) or one of three altered chemosensory phenotypes: 1) stronger sensations overall (42%), 2) weaker sensations overall (18%), or 3) mixed (some sensations stronger and others weaker, 14%). For individual sensations (sweet, sour, salty, bitter, and smell), stronger sensation was twice more prevalent than weaker sensation (P=0.035). Patients reporting chemosensory alteration consumed 20%-25% fewer calories per day (P=0.0018), experienced greater weight loss (P=0.0036), and had poorer QOL scores (P=0.0176) compared with patients with no alterations, but results did not vary by chemosensory phenotype. Chemosensory alterations were not related to tumor type (P=0.884), gender (P=0.286), or nausea (P=0.278). CONCLUSION: Chemosensory alterations predict dietary intake and QOL; the identification of chemosensory phenotypes provides a rationale to adjust the properties of foods and dietary recommendations in function of the specific nature of these changes.