Multidisciplinary care use in neurodegenerative complex diseases: The example of progressive supranuclear palsy and advanced Parkinson's disease in real-life.
Advanced Parkinson's disease
Home care
Multidisciplinary
Progressive supranuclear palsy
Journal
Parkinsonism & related disorders
ISSN: 1873-5126
Titre abrégé: Parkinsonism Relat Disord
Pays: England
ID NLM: 9513583
Informations de publication
Date de publication:
28 Jun 2024
28 Jun 2024
Historique:
received:
16
02
2024
revised:
23
06
2024
accepted:
24
06
2024
medline:
5
7
2024
pubmed:
5
7
2024
entrez:
4
7
2024
Statut:
aheadofprint
Résumé
In spite of being considered the gold-standard of care, little is known about the real-life use of in-home and multidisciplinary care in atypical parkinsonism. Primary: Examine real-life multidisciplinary care use for Progressive Supranuclear Palsy (PSP). Secondary: a) Compare PSP care to advanced Parkinson's disease (APD) care; (b) Explore demographic and clinical variables associated with care needs in both groups. A cross-sectional multicenter observational study enrolled 129 PSP patients and 65 APD patients (Hoehn and Yahr ≥3), matched for sex and age. Univariate and multivariate regression analysis were performed. Over the previous year, 40 % of PSP patients did not encounter a physical therapist, while only one-third met a speech and language therapist and 5 % an occupational therapist. More than 20 % received in-home care and 32 % needed home structural changes. Compared to APD, PSP patients required more day-time, night-time and home structural changes. When considering both PSP and APD in multivariate analysis, reduced functional autonomy and living without a family caregiver were both related to day-time home assistance and to the need of at least one home care service. A PSP diagnosis compared to APD was a risk factor for having at least four multidisciplinary visits in a year. Finally, PSP diagnosis and being from the Northern Italy were significantly related with home structural changes. There's a significant gap in providing multidisciplinary care for PSP patients. Our findings emphasize the need for a shared, integrated care plan at a national level for patients with atypical parkinsonism.
Sections du résumé
BACKGROUND
BACKGROUND
In spite of being considered the gold-standard of care, little is known about the real-life use of in-home and multidisciplinary care in atypical parkinsonism.
OBJECTIVE
OBJECTIVE
Primary: Examine real-life multidisciplinary care use for Progressive Supranuclear Palsy (PSP). Secondary: a) Compare PSP care to advanced Parkinson's disease (APD) care; (b) Explore demographic and clinical variables associated with care needs in both groups.
METHODS
METHODS
A cross-sectional multicenter observational study enrolled 129 PSP patients and 65 APD patients (Hoehn and Yahr ≥3), matched for sex and age. Univariate and multivariate regression analysis were performed.
RESULTS
RESULTS
Over the previous year, 40 % of PSP patients did not encounter a physical therapist, while only one-third met a speech and language therapist and 5 % an occupational therapist. More than 20 % received in-home care and 32 % needed home structural changes. Compared to APD, PSP patients required more day-time, night-time and home structural changes. When considering both PSP and APD in multivariate analysis, reduced functional autonomy and living without a family caregiver were both related to day-time home assistance and to the need of at least one home care service. A PSP diagnosis compared to APD was a risk factor for having at least four multidisciplinary visits in a year. Finally, PSP diagnosis and being from the Northern Italy were significantly related with home structural changes.
CONCLUSIONS
CONCLUSIONS
There's a significant gap in providing multidisciplinary care for PSP patients. Our findings emphasize the need for a shared, integrated care plan at a national level for patients with atypical parkinsonism.
Identifiants
pubmed: 38964017
pii: S1353-8020(24)01059-9
doi: 10.1016/j.parkreldis.2024.107047
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
107047Investigateurs
Marina Serio
(M)
Maurizio Zibetti
(M)
Jacopo Bissacco
(J)
Sara Satolli
(S)
Luisa Sambati
(L)
Ruggero Bacchin
(R)
Chiara Longo
(C)
Roberta Marchese
(R)
Salvatore Panetta
(S)
Luca Magistrelli
(L)
Elena Contaldi
(E)
Vincenzo Moschella
(V)
Maria Concetta Altavista
(MC)
Matteo Costanzo
(M)
Giovanni Fabbrini
(G)
Enrica Olivola
(E)
Nicola Modugno
(N)
Massimo Cincotta
(M)
Maristella Piccininni
(M)
Marianna Capecci
(M)
Nicolò Baldini
(N)
Andrea Ciammola
(A)
Nicola Ticozzi
(N)
Di Giacopo Raffaella
(DG)
Laura De Togni
(L)
Francesca Sala
(F)
Alessandra Nicoletti
(A)
Edoardo Cicero
(E)
Roberto Ceravolo
(R)
Eleonora Del Prete
(E)
Informations de copyright
Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of competing interest The present work was supported by the Fondazione LIMPE which provided administrative support to Marina Picillo, MD, PhD (corresponding author). None of the authors report any financial interests or professional relationship related to the subject matter but not directly to this manuscript for the last 3 years. There are no patents or copyrights licensed to the authors that are relevant to the work submitted for publication. There are no additional relationships or activities to declare that may be perceived to have influenced the submitted work.