Symptom burden among individuals with Parkinson disease: A national survey.


Journal

Neurology. Clinical practice
ISSN: 2163-0402
Titre abrégé: Neurol Clin Pract
Pays: United States
ID NLM: 101577149

Informations de publication

Date de publication:
Feb 2020
Historique:
received: 17 07 2019
accepted: 01 09 2019
entrez: 20 3 2020
pubmed: 20 3 2020
medline: 20 3 2020
Statut: ppublish

Résumé

To explore disease burden in Parkinson disease (PD) by evaluating the prevalence of symptoms and key disease milestones (critical events, e.g., hospitalization or frequent falls) and their association with quality of life (QOL) in those with PD. We created and pretested an online needs assessment survey to evaluate the clinical characteristics, QOL, symptom prevalence, and critical event frequency among those with PD. We recruited individuals with self-reported Hoehn and Yahr stage II-V PD through online postings and email through the Davis Phinney Foundation. We used logistic regression to evaluate the association between a large number of uncontrolled symptoms and events on QOL. A total of 612 individuals (mean age 70.1 years, 49.8% women) completed the survey. Among respondents, 13.6% reported poor QOL. Nearly 20% of respondents reported >3 falls, and 15% of respondents had been hospitalized over the previous 6 months. Participants had an average of 5.1 uncontrolled symptoms, with 86.1% of respondents reporting at least 1 uncontrolled symptom; more than 10% of respondents reported >10 uncontrolled symptoms. Depression, confusion, pain, and bothersome hallucinations were associated with poor QOL among the cohort. In this national survey of individuals with PD, we identified poor QOL, frequent critical events, and numerous uncontrolled symptoms among a substantial proportion of respondents. Although motor symptoms were common, only nonmotor symptoms were associated with poor QOL. Many of these symptoms and events are treatable or preventable, highlighting the need for better identification and management to improve QOL among those with PD.

Identifiants

pubmed: 32190422
doi: 10.1212/CPJ.0000000000000746
pii: NEURCLINPRACT2019042747
pmc: PMC7057075
doi:

Types de publication

Journal Article

Langues

eng

Pagination

65-72

Informations de copyright

© 2019 American Academy of Neurology.

Références

J Biomed Inform. 2009 Apr;42(2):377-81
pubmed: 18929686
J Neurol Sci. 2017 Jan 15;372:471-476
pubmed: 27823833
Qual Life Res. 1995 Jun;4(3):241-8
pubmed: 7613534
J Neurol Sci. 2006 Oct 25;248(1-2):151-7
pubmed: 16797028
Mov Disord. 2008 Nov 15;23(15):2129-70
pubmed: 19025984
Neurology. 2007 Jul 24;69(4):342-7
pubmed: 17581943
Mov Disord. 2012 Apr;27(4):485-91
pubmed: 21953990
Ann Neurol. 2009 Aug;66(2):142-5
pubmed: 19743462
Parkinsonism Relat Disord. 2004 Mar;10(3):129-36
pubmed: 15036166
Mov Disord. 2008 Jan 30;23(2):183-9; quiz 313
pubmed: 17987654
Curr Neurol Neurosci Rep. 2005 Jul;5(4):275-83
pubmed: 15987611
Neurology. 1967 May;17(5):427-42
pubmed: 6067254
Parkinsonism Relat Disord. 2013 Nov;19(11):949-54
pubmed: 23835430
Mov Disord. 2012 Apr;27(4):480-4
pubmed: 22231908
J Aging Phys Act. 2015 Apr;23(2):187-93
pubmed: 24700259
Parkinsonism Relat Disord. 2012 Dec;18 Suppl 3:S10-4
pubmed: 22776044
PLoS One. 2012;7(11):e46327
pubmed: 23144781
Palliat Med. 1995 Jul;9(3):207-19
pubmed: 7582177
Biomed Res Int. 2018 Jul 9;2018:9642524
pubmed: 30105269
Parkinsonism Relat Disord. 2008;14(1):8-14
pubmed: 17702625
Neurology. 2011 Aug 30;77(9):851-7
pubmed: 21832214
Eur J Neurol. 2016 May;23(5):854-60
pubmed: 26806538
Palliat Med. 1997 Jan;11(1):3-20
pubmed: 9068681
J Neurol. 2011 Aug;258(8):1513-7
pubmed: 21394490
Neuropsychiatr Dis Treat. 2006 Sep;2(3):349-53
pubmed: 19412481
Lancet Neurol. 2006 Mar;5(3):235-45
pubmed: 16488379
J Palliat Care. 2015;31(4):213-20
pubmed: 26856121
Neurodegener Dis Manag. 2017 Dec;7(6):365-376
pubmed: 29160144
Palliat Med. 2001 Sep;15(5):387-97
pubmed: 11591090
Mov Disord. 2000 Nov;15(6):1112-8
pubmed: 11104193
Mov Disord. 2001 May;16(3):507-10
pubmed: 11391746

Auteurs

Christopher G Tarolli (CG)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Grace A Zimmerman (GA)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Peggy Auinger (P)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Scott McIntosh (S)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Robert K Horowitz (RK)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Benzi M Kluger (BM)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

E Ray Dorsey (ER)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Robert G Holloway (RG)

Department of Neurology (CGT, GAZ, RGH), University of Rochester Medical Center, NY; Center for Health + Technology (CGT, PA, ERD), University of Rochester Medical Center, NY; Department of Public Health Sciences (SM), University of Rochester Medical Center, NY; Department of Internal Medicine (RKH), Palliative Care Division, University of Rochester Medical Center, NY; and Department of Neurology (BMK), University of Colorado Anschutz Medical Campus, Aurora.

Classifications MeSH