Universität zu Köln

Strupp, J., Groebe, B., Knies, A., Mai, M., Voltz, R. and Golla, H. (2017). Evaluation of a palliative and hospice care telephone hotline for patients severely affected by multiple sclerosis and their caregivers. Eur. J. Neurol., 24 (12). S. 1518 - 1525. HOBOKEN: WILEY. ISSN 1468-1331

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Abstract

Background and purposePalliative and hospice care (PHC) still mainly focuses on patients with cancer. In order to connect patients severely affected by multiple sclerosis (MS) and caregivers to PHC, a nationwide hotline was implemented to facilitate access to PHC. MethodsThe hotline was designed in cooperation with the German Multiple Sclerosis Society. Self-disclosed information given by callers was documented using case-report forms supplemented by personal notes. Data were analysed descriptively. ResultsA total of 222 calls were documented in 27 months. The patients' mean age was 51.12 years (range 27-84 years) and mean illness duration was 18 years (range 1 month to 50 years). Inquiries included information on PHC (28.8%) and access to PHC (due to previous refusal of PHC, 5.4%), general care for MS (36.1%), adequate housing (9.0%) and emotional support in crisis (4.5%). A total of 31.1% of callers reported typical' palliative symptoms (e.g. pain, 88.4%), 50.5% reported symptoms evolving from MS and 35.6% reported psychosocial problems. For 67 callers (30.2%), PHC services were recommended as indicated. ConclusionsThe hotline provided insight into the needs and problems of patients severely affected by MS and their caregivers, some of which may be met by PHC. Future follow-up calls will demonstrate if the hotline helped to improve access to PHC beyond providing information. Overall, the hotline seemed to be easily accessible for patients severely affected by MS whose mobility is limited.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Strupp, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Groebe, B. UNSPECIFIED UNSPECIFIED UNSPECIFIED Knies, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Mai, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Voltz, R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Golla, H. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-209749
DOI:	10.1111/ene.13462
Journal or Publication Title:	Eur. J. Neurol.
Volume:	24
Number:	12
Page Range:	S. 1518 - 1525
Date:	2017
Publisher:	WILEY
Place of Publication:	HOBOKEN
ISSN:	1468-1331
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language QUALITY-OF-LIFE; PEOPLE; DEPRESSION; DISABILITY; SUICIDE; BURDEN; PREVALENCE; FATIGUE; SYMPTOM; IMPACT Multiple languages Clinical Neurology; Neurosciences Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/20974