Highlights
- •MS patients contacting PHC were often bedridden, suffered from severe pain and immobility.
- •The hotline helped to improve access to PHC for a substantial fraction of patients.
- •PHC appears to offer valuable support for both patients and their informal caregivers.
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.
Keywords
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Article info
Publication history
Published online: April 13, 2020
Accepted:
March 29,
2020
Received in revised form:
March 9,
2020
Received:
February 2,
2020
Identification
Copyright
© 2020 Elsevier B.V. All rights reserved.
