The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child-parent agreement and informative domains.
Isolde A R KuijlaarsJanjaap van der NetRoger E G SchutgensKathelijn FischerPublished in: Haemophilia : the official journal of the World Federation of Hemophilia (2019)
In routine clinical practice in Dutch children on prophylaxis, pedHAL scores were high and remained stable in 3-5 years at group level. In individual patients without joint and/or muscle bleeds, pedHAL scores remained high after 1 year. Child-parent agreement was not optimal which indicated that both child report and parent proxy should be reported.