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A palliative care hotline for multiple sclerosis: A pilot feasibility study

Published online by Cambridge University Press:  05 September 2014

Andrea K Knies ,
Heidrun Golla ,
Julia Strupp Open the ORCID record for Julia Strupp [Opens in a new window] ,
Maren Galushko ,
Sabine Schipper  and
Raymond Voltz
Andrea K Knies*
Affiliation:
Department of Palliative Medicine, University Hospital, Cologne, Germany
Heidrun Golla
Affiliation:
Department of Palliative Medicine, University Hospital, Cologne, Germany
Julia Strupp
Affiliation:
Department of Palliative Medicine, University Hospital, Cologne, Germany
Maren Galushko
Affiliation:
Department of Palliative Medicine, University Hospital, Cologne, Germany
Sabine Schipper
Affiliation:
German Multiple Sclerosis Society, State Association, North Rhine-Westphalia, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital, Cologne, Germany Center for Integrated Oncology, Cologne/Bonn, Germany Clinical Trials Center, Cologne, Germany
*
Address correspondence and reprint requests to: Andrea Knies, Department of Palliative Medicine, University Hospital of Cologne, Kerpener Strasse 62, 50937 Cologne, Germany. E-mail: andrea.knies@uk-koeln.de
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Abstract

Objective:

Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.

Method:

The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).

Results:

During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.

Significance of results:

Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

Keywords

Palliative careSeverely affected by multiple sclerosisPatient counselingHotline
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 4 , August 2015 , pp. 1071 - 1078
Copyright
Copyright © Cambridge University Press 2014 

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