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August 2020; 10 (4) Research

Disease severity and quality of life in homebound people with advanced Parkinson disease

A pilot study

Jori E. Fleisher, Meghan M. Sweeney, Sarah Oyler, Talia Meisel, Naomi Friede, View ORCID ProfileAlessandro Di Rocco, View ORCID ProfileJoshua Chodosh
First published September 5, 2019, DOI: https://doi.org/10.1212/CPJ.0000000000000716
Jori E. Fleisher
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Meghan M. Sweeney
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Sarah Oyler
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Talia Meisel
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Naomi Friede
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Alessandro Di Rocco
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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Joshua Chodosh
Rush University (JEF), Section of Movement Disorders, Department of Neurological Sciences, Chicago, IL; New York University Langone Health (JEF), Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, Department of Neurology, NY; Kaiser Permanente (MMS), Department of Palliative Care, Lafayette, CO; Intermountain Medical Center (SO), Movement Disorders, Murray, UT; SUNY Downstate Medical Center College of Medicine (TM), Brooklyn, NY; Yale School of Nursing (NF), Orange, CT; Northwell Health and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell (ADR), Long Island, NY; New York University School of Medicine (JC), Division of Geriatric Medicine and Palliative Care, Department of Medicine, New York, NY; and VA New York Harbor Healthcare System (JC), Medicine Service, New York, NY.
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  • ORCID record for Joshua Chodosh
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Citation
Disease severity and quality of life in homebound people with advanced Parkinson disease
A pilot study
Jori E. Fleisher, Meghan M. Sweeney, Sarah Oyler, Talia Meisel, Naomi Friede, Alessandro Di Rocco, Joshua Chodosh
Neurol Clin Pract Aug 2020, 10 (4) 277-286; DOI: 10.1212/CPJ.0000000000000716

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Abstract

Background As Parkinson disease (PD) progresses, symptoms increase, quality of life (QoL) declines, and individuals may become homebound, often losing access to neurologic care. We aimed to determine whether facilitating expert in-home care could improve our understanding of disease progression, treatment options, and unmet needs in this vulnerable population, and whether such a model could mitigate decline in QoL.

Methods Patients with PD meeting Medicare homebound criteria were eligible for quarterly interdisciplinary home visits over 12 months. Each visit entailed an evaluation by a movement disorders neurologist, social worker, and nurse, including history, examination, medication reconciliation, psychosocial evaluation, pharmacologic and nonpharmacologic management, and service referrals. Disease severity, as measured by the Unified Parkinson's Disease Rating Scale (UPDRS), and QoL using the Neuro-QoL were measured at visits 1 and 4.

Results Of 27 enrolled patients, 23 completed 4 visits, with high retention and high patient- and caregiver-reported satisfaction. The mean age at baseline was 80.9 years (SD 7.8) with a mean total UPDRS of 65.0 (SD 20.0). After one year of home visits, total UPDRS worsened by a mean of 11.8 points (p < 0.01) without a change in any of 8 QoL domains (p = 0.19–0.95).

Conclusions Homebound individuals with advanced PD receiving interdisciplinary home visits experienced no significant decline in QoL over 1 year, despite disease progression. Our findings highlight the disease severity and impaired QoL of the advanced, homebound PD population, and the potential for novel approaches to foster continuity of care.

Footnotes

  • Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

  • Received March 29, 2019.
  • Accepted July 17, 2019.
  • © 2019 American Academy of Neurology
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