Strupp, Julia, Kunde, Anne, Galushko, Maren, Voltz, Raymond and Golla, Heidrun (2018). Severely Affected by Parkinson Disease: The Patient's View and Implications for Palliative Care. Am. J. Hosp. Palliat. Med., 35 (4). S. 579 - 586. THOUSAND OAKS: SAGE PUBLICATIONS INC. ISSN 1938-2715

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Abstract

Introduction: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. Methods: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. Results: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr (P .05), poorer health ( P .01), higher nursing care level (P 0.01), and having no children ( P .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). Conclusions: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Strupp, JuliaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kunde, AnneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Galushko, MarenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Voltz, RaymondUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Golla, HeidrunUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-189810
DOI: 10.1177/1049909117722006
Journal or Publication Title: Am. J. Hosp. Palliat. Med.
Volume: 35
Number: 4
Page Range: S. 579 - 586
Date: 2018
Publisher: SAGE PUBLICATIONS INC
Place of Publication: THOUSAND OAKS
ISSN: 1938-2715
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
NEURODEGENERATIVE CONDITIONS; OF-LIFE; PEOPLE; PERSPECTIVES; MANAGEMENT; NEEDSMultiple languages
Health Care Sciences & ServicesMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/18981

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