- •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.
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.
- Strupp J.
- Groebe B.
- Knies A.
- et al.
Evaluation of a palliative and hospice care telephone hotline for patients severely affected by multiple sclerosis and their caregivers.
Eur. J. Neurol. 2017; 24 (2017/09/20): 1518-1524https://doi.org/10.1111/ene.13462
Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services.
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.
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).
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.
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Published online: April 13, 2020
Accepted: March 29, 2020
Received in revised form: March 9, 2020
Received: February 2, 2020
© 2020 Elsevier B.V. All rights reserved.