Original Study
Characteristics of Patients with Late-Stage Parkinsonism Who are Nursing Home Residents Compared with those Living at Home

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Abstract

Objectives

To determine clinical characteristics and treatment complications of patients with late-stage Parkinsonism living in nursing homes compared with those living at home.

Design

Cross-sectional analysis.

Setting and Participants

This study is an analysis of 692 patients with late stage Parkinsonism recruited to an in-depth international study, Care of Late-Stage Parkinsonism (CLaSP).

Measures

Sociodemographic characteristics were compared between patients who were living in a nursing home (n = 194) and those living at home (n = 498). Clinical assessments included the Unified Parkinson's Disease Rating Scale (UPDRS), the nonmotor symptom scale, the neuropsychiatric inventory, and a structured interview of patients and carers. Predictors of nursing home status were determined in a multivariate analysis.

Results

Nursing home placement was strongly associated with more severe cognitive impairment, worse UPDRS motor scores and disability, and with being unmarried and older. Although nursing home residents had significantly higher axial scores, falls were less common. Despite similar levodopa equivalence doses, they had less dyskinesia. Nonmotor symptom burden, particularly delusion, hallucination, and depression scores were higher in nursing home residents, and they were more frequently on psychotropic medication. They had lower rates of dopamine agonist use and lower rates of impulse control disorders. In multivariate analysis, being unmarried, presence of cognitive impairment, worse disease severity as assessed on the UPDRS parts II and III, severity of delusions, and lower rate of dyskinesia were associated with nursing home placement.

Conclusions and Implications

These clinical characteristics suggest that in patients with Parkinsonsim who are nursing home residents, presence of cognitive impairment and delusions particularly add to the higher overall symptom burden, and more often require specific treatments, including clozapine. Despite similar levodopa equivalent daily dose, motor severity is higher, and dyskinesias, indicative of a response to levodopa, are less common. Falls, however, also occur less commonly, and dopamine agonists are less frequently used, with lower rates of impulse control disorder

Section snippets

Methods

The CLaSP study includes 692 people with Parkinsonism in the late stage of the disease (defined as a disease duration of at least 7 years and Hoehn and Yahr stage IV or V in the “On” state or Schwab and England stage 50% or less) recruited by 8 centers across 6 European countries (UK, Germany, Portugal, Sweden, the Netherlands, and France). Patients were excluded if dementia had clearly preceded the onset of motor symptoms; if they were in stages I-III in the “On” state and had Schwab and

Results

All 692 participants fulfilling inclusion criteria had data on current residence. The baseline characteristics of the cohort across sites are shown in the supplementary data. Table 1 shows differences in participant characteristics between those living in their own homes and in nursing homes. Those in nursing homes were significantly less likely to be married, slightly older, and less likely to have idiopathic PD. There was a trend towards a higher comorbidity burden on the Charlson comorbidity

Discussion

In this large study of a difficult-to-access group with late-stage Parkinsonism, we report significant differences in the clinical profile of those living in nursing homes and those residing at home, which we have summarized in Table 5. These differences are in addition to marital status, a factor known to be a strong predictor of nursing home status in the general population.18, 19, 20 World Health Organization estimate that 40% of people with any form of dementia are cared for mainly by their

Conclusions and Implications

Our analysis shows that patients with PD in nursing homes have more severe motor symptoms, psychiatric symptoms (particularly delusions), and higher rates of dementia. We may be undertreating the motor symptoms of those in nursing homes; conversely, psychiatric symptoms appear to be treated more appropriately in nursing homes. Nonetheless, nursing homes are safe places to live; participants living there had fewer falls, and participants had same satisfaction with care in and out of nursing

Acknowledgments

We thank all the patients and carers who participated in this study, and Kareem Khan, Gergely Bartl, Christian Schmotz, Fabrice Blard, Thomas Boraud, Morgane Gaboreau, Brice Laurens, Umberto Spampinato, Sylvain Vergnet, and Jonathan Timpka for data collection.

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    The CLaSP study is funded by the European Commission (Joint Program–Neurodegenerative Disease Research “European research projects for the evaluation of healthcare policies, strategies, and interventions for Neurodegenerative Diseases”) through national funding bodies in all 6 countries (Economic and Social Research Council ES/L009250/1; BMBF, Marburg, Germany 01ED1403A, Munich, Germany 01ED1403B, Bordeaux, France: ANR-13-JPHC-0001-07, Lisbon, Portugal: HC/0002/2012, Lund, Sweden; HC-559-002, Nijmegen, Holland, 733051003). A. Schrag was supported by the National Institute for Health Research UCL/UCLH Biomedical Research Center. A. Hommel was supported by co-funding of Groenhuysen organization and Stichting Beroepsopleiding Huisartsen.

    Members of the CLaSP Consortium: Margherita Fabbri, François Tison, Alexandra Foubert-Samier, Joy Read, Marjan Meinders, Raymond Koopmans, Carmen Richinger, Kristina Rosqvist, Michael Wittenberg, Petra Neuser.

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