Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)

Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)

Marcus K; Kao P C; Ma C; Wolfe J; DeCourcey D

Journal of Pain and Symptom Management

2020

adult; central nervous system; child; chromosome; chronic disease; conference abstract; data analysis; dyspnea; female; human; major clinical study; male; medical technology; pain; prospective study; young adult

Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cancer and cardiac disease has highlighted significant suffering at end of life (EOL). Children with other life-threatening complex chronic conditions (LT-CCC) comprise a growing proportion of patients, yet little is known about their EOL suffering. Research Objectives: To examine parent perspectives on EOL suffering among children with LT-CCC and factors associated with high child suffering in the final two days of life.

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March 2020 List