Neurological palliative care in children

Title

Neurological palliative care in children

Creator

Fuhrer M

Publisher

Journal Of The Neurological Sciences

Date

2017

Subject

palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics

Description

Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2018 List

Volume

Conference

Collection

Citation

Fuhrer M, “Neurological palliative care in children,” Pediatric Palliative Care Library, accessed July 30, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14593.

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