Follow-Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact

Strupp, Julia; Groebe, Bernadette; Voltz, Raymond; Golla, Heidrun

doi:10.1016/j.msard.2020.102079

Cited by 1 publication

(1 citation statement)

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“…The need for integration of palliative principles and care structures into the treatment of neurological diseases has however become increasingly recognized [ 2 , 11 , 15 , 16 , 17 , 18 ]. To capture neurological signs and symptoms, palliative assessment tools were adjusted to [ 19 , 20 ] or validated for neurological patients [ 21 ].…”

Section: Introductionmentioning

confidence: 99%

The First Neuropalliative Care Unit in Germany—Characteristics of Patients

et al. 2022

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A unique structure of care for neurological inpatients with significant palliative care (PC) needs was established in the Department of Neurology at the Charité—Universitätsmedizin Berlin in 2021: a specialized neuropalliative care (NPC) unit. After one year, we provide an overview of the concept and the patients’ characteristics. Methods: We retrospectively analyzed the characteristics of patients treated in our NPC unit between February 2021–February 2022. Data were extracted from medical records and PC assessment including diagnosis, mode of admission and discharge, length of stay, and palliative symptoms. Data are presented as averages with a 95% confidence interval [lower limit; upper limit] or percentage (absolute number). Results: We included 143 patients (52% (75) female, 67.9 years [65.6; 70.2]). Patients were admitted from general wards (48%; 68), their homes (22%; 32), intensive care units (16%; 23) or emergency departments (14%; 20). The main diagnoses were tumors of the nervous system (39%; 56), neurodegenerative diseases (30%; 43), neurologic complications (13%; 19) and cerebrovascular diseases (12%; 17). Complaints most frequently rated as severely to overwhelmingly burdensome were motor- or fatigue-associated problems, problems communicating, dysphagia and pain. The average length of stay was 13.7 days [12.2; 15.2]. Forty-five percent (64) of patients were discharged without further PC, 17% (24) were referred to a hospice and 13% (18) were discharged with outpatient PC. Five percent (7) were referred to neurorehabilitation and 21% (30) of patients died. Conclusions: Our NPC unit is a new model of care for neurological patients with substantial PC needs especially within the structures of a highly specialized and individualized medicine.

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