Impact of Off Periods on Persons With Parkinson Disease and Care Partners: A Qualitative Study.
Journal
Neurology. Clinical practice
ISSN: 2163-0402
Titre abrégé: Neurol Clin Pract
Pays: United States
ID NLM: 101577149
Informations de publication
Date de publication:
Jun 2021
Jun 2021
Historique:
received:
20
02
2020
accepted:
11
08
2020
entrez:
6
9
2021
pubmed:
7
9
2021
medline:
7
9
2021
Statut:
ppublish
Résumé
The definition of off periods proposed in 2018 emphasizes functional disability as part of the off period experience, but limited research to date investigates the functional impact of off periods on persons with Parkinson disease and care partners. This study aimed to investigate the impact of off periods on both persons with Parkinson disease and care partners through interviews of dyads living with motor and/or nonmotor fluctuations. Investigators performed interviews separately with persons with Parkinson disease and care partners using a semistructured questionnaire. Investigators used a qualitative descriptive approach to identify themes in interview transcripts relating to the impact of off periods on daily life. Identified themes were subsequently organized using World Health Organization quality of life domains. Twenty persons with Parkinson disease and their care partners (total n = 40) participated in interviews. Persons with Parkinson disease described impairments in level of independence (e.g., relating to employment, mobility, activities of daily living, and medication timing), socialization, leisure activities, driving, physical function, and psychological experiences relating to off periods. Care partners reported off period impacts on their own independence, socialization, leisure, and psychological experiences. Clinicians should query the daily impact of off periods on both persons with Parkinson disease and care partners at clinical visits to inform treatment decisions and counseling. Measures of off period impact should be incorporated into clinical trials targeting fluctuations to fully understand the effects of interventions for fluctuations.
Sections du résumé
BACKGROUND
BACKGROUND
The definition of off periods proposed in 2018 emphasizes functional disability as part of the off period experience, but limited research to date investigates the functional impact of off periods on persons with Parkinson disease and care partners. This study aimed to investigate the impact of off periods on both persons with Parkinson disease and care partners through interviews of dyads living with motor and/or nonmotor fluctuations.
METHODS
METHODS
Investigators performed interviews separately with persons with Parkinson disease and care partners using a semistructured questionnaire. Investigators used a qualitative descriptive approach to identify themes in interview transcripts relating to the impact of off periods on daily life. Identified themes were subsequently organized using World Health Organization quality of life domains.
RESULTS
RESULTS
Twenty persons with Parkinson disease and their care partners (total n = 40) participated in interviews. Persons with Parkinson disease described impairments in level of independence (e.g., relating to employment, mobility, activities of daily living, and medication timing), socialization, leisure activities, driving, physical function, and psychological experiences relating to off periods. Care partners reported off period impacts on their own independence, socialization, leisure, and psychological experiences.
CONCLUSIONS
CONCLUSIONS
Clinicians should query the daily impact of off periods on both persons with Parkinson disease and care partners at clinical visits to inform treatment decisions and counseling. Measures of off period impact should be incorporated into clinical trials targeting fluctuations to fully understand the effects of interventions for fluctuations.
Identifiants
pubmed: 34484896
doi: 10.1212/CPJ.0000000000000921
pii: NEURCLINPRACT2020051623
pmc: PMC8382372
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e232-e238Informations de copyright
© 2021 American Academy of Neurology.
Références
Clin Park Relat Disord. 2019 Aug 14;1:31-36
pubmed: 34316596
Parkinsonism Relat Disord. 2011 Jan;17(1):1-9
pubmed: 20833572
J Clin Epidemiol. 2000 Jan;53(1):1-12
pubmed: 10693897
HERD. 2016 Jul;9(4):16-25
pubmed: 26791375
Int J Qual Health Care. 2007 Dec;19(6):349-57
pubmed: 17872937
Parkinsonism Relat Disord. 2018 Jun;51:9-16
pubmed: 29456046
J Int Med Res. 2009 May-Jun;37(3):717-26
pubmed: 19589255
J Parkinsons Dis. 2015;5(3):533-9
pubmed: 26406133
Qual Life Res. 1995 Jun;4(3):241-8
pubmed: 7613534
J Adv Nurs. 2011 Feb;67(2):408-17
pubmed: 20946567
Parkinsonism Relat Disord. 2014 Sep;20(9):969-74
pubmed: 24953743
J Neurol Sci. 2016 May 15;364:1-5
pubmed: 27084204
PLoS One. 2019 Apr 18;14(4):e0215384
pubmed: 30998707
Mov Disord. 2011 Oct;26(12):2169-75
pubmed: 21780180
Health Expect. 2019 Jun;22(3):555-564
pubmed: 30977262
Qual Life Res. 2016 Jun;25(6):1505-15
pubmed: 26627224