Universität zu Köln

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:	Creators Email ORCID ORCID Put Code Strupp, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Kunde, Anne UNSPECIFIED UNSPECIFIED UNSPECIFIED Galushko, Maren UNSPECIFIED UNSPECIFIED UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED Golla, Heidrun UNSPECIFIED UNSPECIFIED UNSPECIFIED
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:	Keywords Language NEURODEGENERATIVE CONDITIONS; OF-LIFE; PEOPLE; PERSPECTIVES; MANAGEMENT; NEEDS Multiple languages Health Care Sciences & Services Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/18981