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Self-rating makes the difference: Identifying palliative care needs of patients feeling severely affected by multiple sclerosis

Published online by Cambridge University Press:  22 May 2014

Julia Strupp Open the ORCID record for Julia Strupp [Opens in a new window] ,
Heidrun Golla ,
Maren Galushko ,
Raphael Buecken ,
Nicole Ernstmann ,
Moritz Hahn ,
Holger Pfaff  and
Raymond Voltz
Julia Strupp*
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Heidrun Golla
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Maren Galushko
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Raphael Buecken
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Nicole Ernstmann
Affiliation:
Center for Health Services Research, University of Cologne, Cologne, Germany
Moritz Hahn
Affiliation:
Institute of Medical Statistics, Informatics and Epidemiology, University Hospital of Cologne, Cologne, Germany
Holger Pfaff
Affiliation:
Center for Health Services Research, University of Cologne, Cologne, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany Center for Integrated Oncology Cologne/Bonn, Cologne, Germany Clinical Trials Center, Cologne, Germany
*
Address correspondence and reprint requests to: Julia Strupp, University Hospital Cologne, Kerpener Strasse 62, D-50937 Köln, Germany. E-mail: [email protected]
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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 care was 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.

Keywords

Multiple sclerosisNeeds assessmentSevere affectednessPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 733 - 740
Copyright
Copyright © Cambridge University Press 2014 

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Footnotes

*

Both authors contributed equally to this work.

References

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