Universität zu Köln

Strupp, Julia, Golla, Heidrun, Galushko, Maren, Buecken, Raphael, Ernstmann, Nicole ORCID: 0000-0001-7685-6110, Hahn, Moritz, Pfaff, Holger ORCID: 0000-0001-9154-6575 and Voltz, Raymond (2015). Self-rating makes the difference: Identifying palliative care needs of patients feeling severely affected by multiple sclerosis. Palliat. Support Care, 13 (3). S. 733 - 741. NEW YORK: CAMBRIDGE UNIV PRESS. ISSN 1478-9523

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Abstract

Objective: People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs. Method: A self-report questionnaire with 25 needs categories including 7 categories pertaining to carewas applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (>= 7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann-Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients. Results: Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006). Significance of results: A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Strupp, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Golla, Heidrun UNSPECIFIED UNSPECIFIED UNSPECIFIED Galushko, Maren UNSPECIFIED UNSPECIFIED UNSPECIFIED Buecken, Raphael UNSPECIFIED UNSPECIFIED UNSPECIFIED Ernstmann, Nicole UNSPECIFIED orcid.org/0000-0001-7685-6110 UNSPECIFIED Hahn, Moritz UNSPECIFIED UNSPECIFIED UNSPECIFIED Pfaff, Holger UNSPECIFIED orcid.org/0000-0001-9154-6575 UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-402552
DOI:	10.1017/S1478951514000510
Journal or Publication Title:	Palliat. Support Care
Volume:	13
Number:	3
Page Range:	S. 733 - 741
Date:	2015
Publisher:	CAMBRIDGE UNIV PRESS
Place of Publication:	NEW YORK
ISSN:	1478-9523
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language FAST-TRACK TRIAL; QUALITY-OF-LIFE; PEOPLE; EXPERIENCES; CONSULTATION; VALIDATION; SUICIDE; GERMANY; SUPPORT; CANCER Multiple languages Health Policy & Services Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/40255