P116 – 2582: Palliative care and paediatric neurology

Abstract

Objective The high frequency of neurological processes of uncertain or incurable prognosis demands an active and global attention of the patient and his family aiming to improve the attention and the quality of life of these patients. The palliative care have to be integrated into the neurology practice. We analyzed the characteristics of pediatric neurological patients admitted to the Pediatric Home Health Care Unit of a major hospital with neurological diseases including epidemiological, diagnostic, developmental and survival data. Methods A retrospective, descriptive study of patients admitted to Home Health Care with neurological diseases for palliative care for 5 years. Results During past 5 years 52 patients were admitted with neurological disorders (10.5% of total). The mean age on admittance was 34.5 months (range 0 to 152 months). The male/female ratio was 24/28. The most frequent disorders were: 10 severe cerebral palsy with difficult to control symptoms, 8 brain tumors, 5 metabolic disorders, 6 central nervous system malformations, 4 hypoxic ischemic encephalopathies, 4 patients with sequels of extremely premature birth, 3 spinal muscular atrophies and 2 chromosomal abnormalities. Provenance was mostly hospital wards (54%), and oncology (15%) and neurology (12%) consultations. In addition to general palliative care, 41 patients required enteral nutrition, 26 requiered oxygen and 7 NIV in their homes. During follow-up, there was at least one hospital admission in 18 patients. The mean stay in the unit was 8.6 months. Of the patients admitted, 13 died, five of them at home. Conclusion Diverse neurological diseases are characterized by a lack of response to the treatment, a progressive evolution of the disease, and in certain cases, a fatal prognosis in a relatively short term. We propose, in these patients, comprehensive care at home to prevent unnecessary hospital admissions, and when the time comes help them at the end of their days