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Need for palliative care from birth to infancy in pediatric patients with neurological diseases
Raffaele Falsaperla1,2, Silvia Marino1, Carla Moscheo1
1Pediatric and Pediatric Emergency Department, AOUP Rodolico-San Marco, Catania, Italy.
Insights
Pediatric palliative care is crucial for infants with neurological disorders. Establishing a dedicated unit can improve care quality and support families facing these challenging diagnoses.
Area of Science:
- Pediatric Neurology
- Palliative Care Medicine
- Neonatology
Background:
- Palliative care offers comprehensive comfort for pediatric patients and families from diagnosis through end-of-life.
- Neurological palliative care techniques can significantly improve the quality of care for children with neurological disorders.
Purpose of the Study:
- Analyze existing palliative care protocols within the department.
- Describe the palliative care course for neurological patients in a clinical setting.
- Propose the implementation of hospital-based palliative care for improved long-term prognosis in pediatric neurological diseases.
Main Methods:
- Retrospective observational study of palliative care application in neurological patients from birth to early infancy.
- Analysis of 34 newborns with nervous system diseases affecting prognosis.
- Data collected from 2016-2020 at San Marco University Hospital, Catania, Italy.
Main Results:
- No palliative care network is currently active in Italy, despite legislation.
- A high number of pediatric neurological patients require palliative care.
- A dedicated departmental unit for pediatric neurological palliative care is recommended.
Conclusions:
- Advances in neuroscience have led to specialized centers for neurological illnesses.
- Integration of specialized palliative care for these conditions is currently limited but essential.
- Establishing dedicated palliative care units is vital for managing complex pediatric neurological cases.
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.
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