Malcolm, C., Hain, R., Gibson, F., Adams, S., Anderson, G. & Forbat, L. (2012). Challenging symptoms in children with rare life-limiting conditions: Findings from a prospective diary and interview study with families. Acta Paediatrica,101(9), 985-992. United Kingdom: Wiley-Blackwell Publishing. Retrieved from https://doi.org/10.1111/j.1651-2227.2012.02680.x
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms in children with two rare life-limiting conditions [Mucopolysaccharide ( MPS ) and Batten disease].
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