Universität zu Köln

Strupp, Julia, Groebe, Bernadette, Voltz, Raymond and Golla, Heidrun (2020). Follow -Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact. Mult. Scler. Relat. Disord., 42. OXFORD: ELSEVIER SCI LTD. ISSN 2211-0356

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Abstract

Background: Palliative and Hospice Care (PHC) focuses on improving quality of life for anyone who has a serious illness. Multiple Sclerosis (MS) patients have significant PHC needs, yet PHC still mostly attends to cancer patients. The implemented and evaluated nationwide PHC -MS hotline (Strupp et al., 2017) appeared to provide a useful service to patients. Objectives: Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services. Methods: Information on implementing PHC services was gathered through follow-up hotline consultations utilising a standardised documentary sheet. Data was analysed descriptively and several individual cases are presented. Results: Of 303 calls to the hotline (54.5% female, mean age 51 years, 87.7% chronic progressive MS, mean duration of illness 17 years, median EDSS 8), for 84 (27.7%) PHC services were indicated. Of these 84 patients, 32 agreed to follow-up calls which were conducted at least once. For 6 (19%) patients, PHC service integration was successful. For 5 (16%) PHC was refused. For 5 (16%) PHC did not fit current patient needs, and for 7 (22%) PHC has not yet been contacted by patients (or caregivers). For a further 9 (28%) follow-ups revealed that no more consultation was possible (e.g., caller lost to follow-up). Conclusion: The PHC approach and its services as well as legislation are still highly focused on cancer care, although patients with long-term neurological conditions would likely benefit greatly from them.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Strupp, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Groebe, Bernadette UNSPECIFIED UNSPECIFIED UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED Golla, Heidrun UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-328189
DOI:	10.1016/j.msard.2020.102079
Journal or Publication Title:	Mult. Scler. Relat. Disord.
Volume:	42
Date:	2020
Publisher:	ELSEVIER SCI LTD
Place of Publication:	OXFORD
ISSN:	2211-0356
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language QUALITY-OF-LIFE; PEOPLE; MANAGEMENT; NEUROLOGY; MODEL; LONG Multiple languages Clinical Neurology Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/32818