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Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS
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Author(s): Ami Baba, Dawn P. Richards, Maureen Smith, Nicole Pallone, Shelley Vanderhout, Matthew Prebeg, Ellen B. M. Elsman, Beth K. Potter, Martin Offringa & Nancy J. Butcher
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Description: Pediatric trials are possible through voluntary participation of children, youth (age ? 18 years), and their families. Despite important arguments for trialists to provide trial progress or results, and evidence that participants desire it, this information remains rarely shared with youth and their families. Little guidance exists on how trialists can best communicate trial results back to participants and their families. Guided by Liabo et al.'s framework, we describe how we developed a pediatric-specific, "plain language summary" clinical trial results template called CommuniKIDS with an adult patient partner, family partner (parent), youth advisors, and parent advisors, taking into account their unique knowledge needs and preferences.
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