AIM: Currently there are few population-based data on the outcomes of stroke in childhood, and no data on what parents want from such research. We conducted a Delphi Consensus Process among parents of children (n = 26) who had suffered an arterial ischaemic stroke to investigate which research outcomes they think are most important to follow up, and what methods of assessment they would find most acceptable.
METHODS: A postal Delphi Consensus Process was conducted.
RESULTS: The Delphi panel reached consensus that motor, cognitive and communication outcomes are the most important outcome domains to assess. They strongly preferred home visits over hospital visits or telephone interview. The majority were happy with assessment visits lasting up to 1.5 h. Ongoing concerns for panel members related to the cause of the original stroke, the risk of recurrence and the long term outcome for their child.
INTERPRETATION: Future outcome studies should preferably assess outcomes at home and focus on children's motor, cognitive and communication abilities. There is an ongoing need to clarify issues with regards to the likely cause of children's strokes and their risk of recurrence.
|Journal||European Journal of Paediatric Neurology|
|Publication status||Published - 16 Dec 2014|