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Caregiver burden in late-stage Parkinsonism and its associations

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dc.contributor.authorKalampokini, Stefanial
dc.contributor.authorHommel, Adrianus L. A. J.
dc.contributor.authorLorenzl, Stefan
dc.contributor.authorFerreira, Joaquim J
dc.contributor.authorMeissner, Wassilios G.
dc.contributor.authorOdin, Per
dc.contributor.authorBloem, Bastiaan R.
dc.contributor.authorDodel, Richard
dc.contributor.authorSchrag, Anette-Eleonore
dc.date.accessioned2021-04-09T12:34:41Z
dc.date.available2021-04-09T12:34:41Z
dc.date.issued2020
dc.descriptionCopyright © 2020, © SAGE Publicationspt_PT
dc.description.abstractBackground: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism. Patients and methods: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients’ motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers’ health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Results: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients’ neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers’ EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001). Conclusion: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.pt_PT
dc.description.sponsorshipThe study was funded by the European Commission (Joint Programme-Neurodegenerative Disease Research “European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases”) through national funding bodies in all 6 countries (Economic and Social Research Council ES/L009250/1; BMBF, Marburg, Germany 01ED1403A, Munich, Germany 01ED1403B, Bordeaux, France: ANR-13-JPHC-0001-07, Lisbon, Portugal: HC/0002/2012, Lund, Sweden: HC-559-002, Nijmegen, Holland, 733051003). AS was supported by the National Institute for Health Research UCL/UCLH Biomedical Research Centre. AH was supported by co-funding of Groenhuysen organization and Stichting Beroepsopleiding Huisartsen.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Geriatr Psychiatry Neurol. 2020 Oct 23:891988720968263.pt_PT
dc.identifier.doi10.1177/0891988720968263pt_PT
dc.identifier.eissn1552-5708
dc.identifier.issn0891-9887
dc.identifier.urihttp://hdl.handle.net/10451/47309
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSAGE Publicationspt_PT
dc.relationCare for Late Stage Parkinsonism
dc.relation.publisherversionhttps://journals.sagepub.com/home/jgppt_PT
dc.subjectLate-stage parkinsonismpt_PT
dc.subjectCaregiver burdenpt_PT
dc.subjectNeuropsychiatricpt_PT
dc.subjectNon-motor symptomspt_PT
dc.titleCaregiver burden in late-stage Parkinsonism and its associationspt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardNumberJPND-HC/0002/2012
oaire.awardTitleCare for Late Stage Parkinsonism
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/3599-PPCDT/JPND-HC%2F0002%2F2012/PT
oaire.citation.titleJournal of Geriatric Psychiatry and Neurologypt_PT
oaire.fundingStream3599-PPCDT
person.familyNameFerreira
person.givenNameJoaquim J
person.identifier1624753
person.identifier.ciencia-id7D15-5CD6-6159
person.identifier.orcid0000-0003-3950-5113
person.identifier.scopus-author-id7403252466
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsrestrictedAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication54d84fe7-2cbd-4ddc-bce2-0ff2bd7c4cc9
relation.isAuthorOfPublication.latestForDiscovery54d84fe7-2cbd-4ddc-bce2-0ff2bd7c4cc9
relation.isProjectOfPublication8e1e953f-7d9c-4d6a-9dcb-2e63ba544f15
relation.isProjectOfPublication.latestForDiscovery8e1e953f-7d9c-4d6a-9dcb-2e63ba544f15

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