The Natural History and Illness Trajectories of Chronic Heart and Lung Diseases (P19)

Abstract

3. Integrate symptom management strategies for intractable problems into a patients’ medical care plan. More than 15,000 children die from life-limiting conditions each year in the United States. Data reveals the majority of those children suffer from a multitude of distressing symptoms in their endof-life period. The management of children with intractable distressing symptoms remains a challenge. This workshop will address the assessment and management of symptoms most commonly encountered in children both throughout life-limiting disease and at end-of-life, and will be broken down into gastrointestinal, respiratory, fatigue, and neurological symptoms. When relevant, specific patient populations based on primary disease or impairment will be highlighted, including cancer, cardiac, pulmonary, and neurological impairment from various causes (ie, anoxic injury, cerebral palsy, genetic disorders, metabolic diseases, congenital anomalies, or structural brain malformations). Available evidence will be incorporated into each section and a summary outlining a stepwise approach will be provided including strategies for recalcitrant, complex symptoms utilizing pharmacology and integrative as well as supportive therapies. Dr. Friedrichsdorf will review the prevalence of distressing symptoms in pediatric palliative care and discuss practical considerations in managing dyspnea and hypersecretion as well as nausea and vomiting. Dr. Hauer will cover the management of agitation, autonomic events, and neuro-irritability, especially in neurological impaired children. Dr. Foster-Barber will discuss management of movement disorders, spasticity, and seizures. Dr. Tremonti will review strategies in the symptom management of constipation with an emphasis on opioid-induced constipation. Dr. Ullrich will evaluate current treatment strategies for fatigue and sleep disturbance in pediatric palliative care.