Children with progressive, non-curable genetic, metabolic or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms needs to begin at diagnosis, yet little is known about their patterns of symptoms and functional abilities. The study followed 275 children and their families in Canada and in the USA. The findings showed that the 3 most common symptoms for these children were pain, sleep problems and feeding difficulties. There was a pattern of under-reporting, and regardless of medication, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms and respiratory problems. The study showed that children experience multiple symptoms that have previously been documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden.
Steele, R., Siden, H., Cadell, S., Davies, B., Andrews, G., Feichtinter, L. & Singh, M. 2014. Charting the territory: symptoms and functional assessment in children with progressive non-curable disease. Archives of Disease in Childhood, 99 (8) p 754 - 762
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