Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home.
Home visits
Parkinson’s disease (PD)
interdisciplinary
neurodegenerative disease
Journal
Annals of palliative medicine
ISSN: 2224-5839
Titre abrégé: Ann Palliat Med
Pays: China
ID NLM: 101585484
Informations de publication
Date de publication:
Feb 2020
Feb 2020
Historique:
received:
12
08
2019
accepted:
09
09
2019
pubmed:
19
11
2019
medline:
25
11
2020
entrez:
19
11
2019
Statut:
ppublish
Résumé
Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers. With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases. The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients. As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.
Sections du résumé
BACKGROUND
BACKGROUND
Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.
METHODS
METHODS
With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.
RESULTS
RESULTS
The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients.
CONCLUSIONS
CONCLUSIONS
As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.
Identifiants
pubmed: 31735037
pii: apm.2019.09.12
doi: 10.21037/apm.2019.09.12
pmc: PMC7341729
mid: NIHMS1605529
doi:
Types de publication
Case Reports
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
S80-S89Subventions
Organisme : NINDS NIH HHS
ID : K23 NS097615
Pays : United States
Organisme : NINDS NIH HHS
ID : L30 NS084235
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG066512
Pays : United States
Références
Mov Disord. 2005 Feb;20(2):190-9
pubmed: 15551331
Parkinsonism Relat Disord. 2011 Mar;17(3):139-45
pubmed: 21159538
Mt Sinai J Med. 2012 Jul-Aug;79(4):425-32
pubmed: 22786732
Aging Clin Exp Res. 2013 Oct;25(5):575-81
pubmed: 23949975
Parkinsonism Relat Disord. 2013 Feb;19(2):218-21
pubmed: 23102808
BMJ Open. 2014 Dec 08;4(12):e006544
pubmed: 25488097
J Am Geriatr Soc. 2000 Aug;48(8):938-42
pubmed: 10968298
Contemp Clin Trials. 2019 Apr;79:28-36
pubmed: 30779960
Br J Clin Pharmacol. 2015 Dec;80(6):1254-68
pubmed: 27006985
Lancet Neurol. 2017 Nov;16(11):877-897
pubmed: 28931491
Mov Disord. 2015 Apr 15;30(5):639-45
pubmed: 25678194
Mov Disord. 2018 Mar;33(3):372-390
pubmed: 29508455
Parkinsonism Relat Disord. 2013 Nov;19(11):949-54
pubmed: 23835430
Mov Disord. 2018 Apr;33(4):537-543
pubmed: 29356127
Neurol Clin Pract. 2016 Jun;6(3):209-219
pubmed: 27347438
Eur J Neurol. 2014 Mar;21(3):519-24
pubmed: 24447695
J Am Geriatr Soc. 2014 Oct;62(10):1954-61
pubmed: 25333529
Int J Clin Pract. 2018 Jan;72(1):
pubmed: 29119656
Parkinsonism Relat Disord. 2015 May;21(5):449-54
pubmed: 25737205
Support Care Cancer. 2014 Apr;22(4):1113-9
pubmed: 24362845
J Gen Intern Med. 2019 Apr;34(4):559-566
pubmed: 30719645
J Neurol. 2017 Aug;264(8):1567-1582
pubmed: 28050656
Neurology. 2015 Aug 4;85(5):413-9
pubmed: 26138947
J Am Geriatr Soc. 2019 Apr;67(4):674-694
pubmed: 30693946
J Palliat Med. 2017 Sep;20(9):930-938
pubmed: 28520498
Ann Palliat Med. 2018 Jul;7(3):339-348
pubmed: 29307208
Dement Geriatr Cogn Disord. 2011;32(4):227-34
pubmed: 22122992
PLoS One. 2015 Apr 17;10(4):e0124356
pubmed: 25884484
J Am Geriatr Soc. 2018 Jul;66(6):1226-1232
pubmed: 29608779
Am J Geriatr Pharmacother. 2012 Aug;10(4):230-41
pubmed: 22683399
Parkinsonism Relat Disord. 2011 Jul;17(6):440-5
pubmed: 21458353
Mov Disord. 2014 Jun;29(7):871-83
pubmed: 24838316
Neurology. 2012 Oct 23;79(17):1774-80
pubmed: 23054239
Parkinsonism Relat Disord. 2012 Dec;18 Suppl 3:S6-9
pubmed: 22867994
PLoS One. 2017 Jul 6;12(7):e0180425
pubmed: 28683150
J Am Geriatr Soc. 2009 Dec;57(12):2328-37
pubmed: 20121991
PLoS One. 2018 Feb 15;13(2):e0191322
pubmed: 29447291
JAMA Intern Med. 2015 May;175(5):691-700
pubmed: 25798575
Eur J Neurol. 2009 Feb;16(2):194-200
pubmed: 19146640
Mov Disord. 2008 Apr 30;23(6):837-44
pubmed: 18307261
Parkinsons Dis. 2012;2012:391946
pubmed: 22530161
Exp Ther Med. 2019 Mar;17(3):1611-1624
pubmed: 30783428