Parkinson disease patients' perspectives on palliative care needs: What are they telling us?
Identifieur interne : 000184 ( PubMed/Checkpoint ); précédent : 000183; suivant : 000185Parkinson disease patients' perspectives on palliative care needs: What are they telling us?
Auteurs : Isabel Boersma [Canada] ; Jacqueline Jones [Canada] ; Julie Carter [Canada] ; David Bekelman [Canada] ; Janis Miyasaki [Canada] ; Jean Kutner [Canada] ; Benzi Kluger [Canada]Source :
- Neurology. Clinical practice [ 2163-0402 ] ; 2016.
Abstract
A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences.
DOI: 10.1212/CPJ.0000000000000233
PubMed: 27347438
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the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Jones, Jacqueline" sort="Jones, Jacqueline" uniqKey="Jones J" first="Jacqueline" last="Jones">Jacqueline Jones</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Carter, Julie" sort="Carter, Julie" uniqKey="Carter J" first="Julie" last="Carter">Julie Carter</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Bekelman, David" sort="Bekelman, David" uniqKey="Bekelman D" first="David" last="Bekelman">David Bekelman</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Miyasaki, Janis" sort="Miyasaki, Janis" uniqKey="Miyasaki J" first="Janis" last="Miyasaki">Janis Miyasaki</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Kutner, Jean" sort="Kutner, Jean" uniqKey="Kutner J" first="Jean" last="Kutner">Jean Kutner</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Kluger, Benzi" sort="Kluger, Benzi" uniqKey="Kluger B" first="Benzi" last="Kluger">Benzi Kluger</name><affiliation wicri:level="1"><nlm:affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author></analytic><series><title level="j">Neurology. Clinical practice</title><idno type="ISSN">2163-0402</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences.</div></front></TEI><pubmed><MedlineCitation Status="Publisher" Owner="NLM"><PMID Version="1">27347438</PMID><DateCreated><Year>2016</Year><Month>06</Month><Day>27</Day></DateCreated><DateRevised><Year>2017</Year><Month>02</Month><Day>20</Day></DateRevised><Article PubModel="Print"><Journal><ISSN IssnType="Print">2163-0402</ISSN><JournalIssue CitedMedium="Print"><Volume>6</Volume><Issue>3</Issue><PubDate><Year>2016</Year><Month>Jun</Month></PubDate></JournalIssue><Title>Neurology. Clinical practice</Title><ISOAbbreviation>Neurol Clin Pract</ISOAbbreviation></Journal><ArticleTitle>Parkinson disease patients' perspectives on palliative care needs: What are they telling us?</ArticleTitle><Pagination><MedlinePgn>209-219</MedlinePgn></Pagination><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">A total of 30 in-depth individual interviews and 4 focus groups were held to elicit the perspectives of patients with PD on unmet palliative care needs and preferences for addressing these needs. We used ATLAS.ti and inductive qualitative data analysis techniques to interpret responses.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Patients articulated major challenges in living with a diverse and complex set of motor and nonmotor symptoms; feelings of loss; changes in roles, relationships, and concept of self; and expressed concerns about the future. Participants discussed gaps in their care, including support at the time of diagnosis, education about the disease, and advance care planning. There was an expressed interest in and openness of participants to interdisciplinary approaches for addressing these needs.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">PD has a profound effect on multiple domains of a person's life starting at diagnosis. Patients desired individualized care and identified several areas where care from their primary neurologist could be improved. Patients were receptive to outpatient team-based palliative care services to address psychosocial issues, adjustment to illness (particularly at diagnosis and with progression), nonmotor symptom control, and advance care planning as an adjunct to usual care. Future research is needed to develop and test the effectiveness of palliative approaches to improve the care of patients with PD.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Boersma</LastName><ForeName>Isabel</ForeName><Initials>I</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Jones</LastName><ForeName>Jacqueline</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Carter</LastName><ForeName>Julie</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bekelman</LastName><ForeName>David</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Miyasaki</LastName><ForeName>Janis</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kutner</LastName><ForeName>Jean</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kluger</LastName><ForeName>Benzi</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList></Article><MedlineJournalInfo><Country>United States</Country><MedlineTA>Neurol Clin Pract</MedlineTA><NlmUniqueID>101577149</NlmUniqueID><ISSNLinking>2163-0402</ISSNLinking></MedlineJournalInfo><CommentsCorrectionsList><CommentsCorrections RefType="Cites"><RefSource>J Neurol Neurosurg Psychiatry. 1992 Mar;55(3):181-4</RefSource><PMID 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