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• W3017029058 abstract "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." @default.
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• W3017029058 date "2020-07-01" @default.
• W3017029058 modified "2023-10-12" @default.
• W3017029058 title "Follow-Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact" @default.
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• W3017029058 doi "https://doi.org/10.1016/j.msard.2020.102079" @default.
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