Clin Exp Pediatr.  2023 Aug;66(8):350-356. 10.3345/cep.2023.00129.

Need for palliative care from birth to infancy in pediatric patients with neurological diseases

• Falsaperla R
• Marino S
• Moscheo C
• Tardino LG
• Marino SD
• Sciuto C
• Pavone P
• Vitaliti G
• Sullo F
• Ruggieri M

• KMID: 2544746
• DOI: http://doi.org/10.3345/cep.2023.00129

Abstract

Background
Palliative care is a comprehensive treatment approach that guarantees comfort for pediatric patients and their families from diagnosis to death. The techniques used for neurological patients in the field of palliative care can enhance the quality of care provided to patients with neurological disorders and support their families. Purpose: This study aimed to analyze the palliative care protocols in use in our department, describe the palliative course in the clinical setting, and propose the implementation of hospital palliative care for long-term prognosis of patients with neurological diseases.
Methods
This retrospective observational study examined the application of palliative care from birth to early infancy in neurological patients. We studied 34 newborns with diseases affecting the nervous system impairing prognosis. The study was conducted from 2016 to 2020 at the Neonatology Intensive Care Unit and the Pediatric Unit of the San Marco University Hospital in Catania, Sicily, Italy.
Results
Despite current legislation in Italy, no palliative care network has been activated to meet the needs of the population. In our center, given the vast number of patients with neurological conditions requiring palliative care, we should activate a straightforward departmental unit for neurologic pediatric palliative care.
Conclusion
The establishment of specialized reference centers that manage significant neurological illnesses is due to neuroscience research progress in recent decades. Integration with specialized palliative care is sparse but now seems essential.

Keyword

Newborn infant; Pediatric neurology; Palliative care