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
Full text not available from this repository.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: |
|
||||||||||||||||||||
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: |
|
||||||||||||||||||||
URI: | http://kups.ub.uni-koeln.de/id/eprint/32818 |
Downloads
Downloads per month over past year
Altmetric
Export
Actions (login required)
![]() |
View Item |