TY - JOUR
T1 - Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement
T2 - An Explorative Secondary Data Analysis
AU - Hanff, Anne Marie
AU - Pauly, Claire
AU - Pauly, Laure
AU - Schröder, Valerie E.
AU - Hansen, Maxime
AU - Meyers, Guilherme Ramos
AU - Kaysen, Anne
AU - Hansen, Linda
AU - Wauters, Femke
AU - Krüger, Rejko
AU - NCER-PD
N1 - FUNDING
This work was supported by grants from the Luxembourg National Research Fund (FNR) within the National Centre of Excellence in Research on Parkinson’s disease [NCERPD(FNR/NCER13/BM/11264123)]. RK has received research grants from Fonds National de Recherche de Luxembourg (FNR) as Coordinator of the National Centre for Excellence in Research on Parkinson’s disease (NCER-PD) and within the PEARL Excellence Programme (FNR/P13/6682797/Krüger), and the following projects MiRisk (C17/BM/11676395), MotaSYN (12719684), MAMaSyn. Work of RK was supported by the German Research Council (DFG; KR2119/8-1), the Michael J. Fox Foundation (ID: 1480), the European Union’s Horizon 2020 research and innovation program (WIDESPREAD; CENTRE-PD; grant agreement no. 692320), and the European Union’s EIT Health grant for MoveIT (ID: 18034).
Publisher Copyright:
© Copyright © 2021 Hanff, Pauly, Pauly, Schröder, Hansen, Meyers, Kaysen, Hansen, Wauters and Krüger.
PY - 2021/1/18
Y1 - 2021/1/18
N2 - Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, and self-reported COVID-19 related hospitalization in Luxembourg and the Greater Region were assessed. From 18th March to 10th April 2020, 679 PwP were contacted by phone. Data was collected in the form of a semi-structured interview. The thematic synthesis identified 25 themes where PwP need to be supported in order to cope with consequences of the pandemic, and to adapt their daily and health-related activities. The present work highlights that in the context of personalized medicine, depending on the individual needs of support of the patient the identified self-perceived unmet needs were addressed in various ways ranging from one-directed information over interaction up to proactive counseling and monitoring. Family and health professionals, but also other support systems were taking care of the unmet needs of PwP (e.g., shopping, picking-up medication, etc.) during the pandemic. 7/606 PwP (1.15%) reported COVID-19 related symptoms, 4/606 (0.66%) underwent a rRT-PCR-based diagnostic test and 2/606 (0.33%) were confirmed as SARS-CoV-2 positive. None of these PwP reported being hospitalized due to COVID-19. Our results will allow health professionals to expand their services in a meaningful way i.e., personalize their support in the identified themes and thus improve the healthcare of PwP in times of crisis.
AB - Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, and self-reported COVID-19 related hospitalization in Luxembourg and the Greater Region were assessed. From 18th March to 10th April 2020, 679 PwP were contacted by phone. Data was collected in the form of a semi-structured interview. The thematic synthesis identified 25 themes where PwP need to be supported in order to cope with consequences of the pandemic, and to adapt their daily and health-related activities. The present work highlights that in the context of personalized medicine, depending on the individual needs of support of the patient the identified self-perceived unmet needs were addressed in various ways ranging from one-directed information over interaction up to proactive counseling and monitoring. Family and health professionals, but also other support systems were taking care of the unmet needs of PwP (e.g., shopping, picking-up medication, etc.) during the pandemic. 7/606 PwP (1.15%) reported COVID-19 related symptoms, 4/606 (0.66%) underwent a rRT-PCR-based diagnostic test and 2/606 (0.33%) were confirmed as SARS-CoV-2 positive. None of these PwP reported being hospitalized due to COVID-19. Our results will allow health professionals to expand their services in a meaningful way i.e., personalize their support in the identified themes and thus improve the healthcare of PwP in times of crisis.
KW - COVID
KW - Parkinson disease
KW - health services needs and demand
KW - needs assessment
KW - pandemic
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85100548326&partnerID=8YFLogxK
UR - https://pubmed.ncbi.nlm.nih.gov/33536999
U2 - 10.3389/fneur.2020.615172
DO - 10.3389/fneur.2020.615172
M3 - Article
C2 - 33536999
AN - SCOPUS:85100548326
SN - 1664-2295
VL - 11
SP - 615172
JO - Frontiers in Neurology
JF - Frontiers in Neurology
M1 - 615172
ER -