Abstract:
AIM:Explore perspectives of adolescent and young adult (AYA) and parent stakeholders regarding their engagement in comparative effectiveness research (CER) evaluating cholesterol screening and treatment strategies for 17-21 year olds. METHODS:All nine AYAs and parent stakeholders participating in a 20-member panel of AYAs, parents and professionals (i.e., clinicians, researchers, policy makers, payers), completed a quantitative survey and a semistructured interview at the completion of the core CER study. RESULTS & CONCLUSION:AYAs and parents stakeholders emphasized the role of power differentials regarding shared knowledge, relationships and trust, and logistics. To mitigate power differentials, stakeholders recommended more materials, clearer definition of roles and in-person meetings. Perceived positive outcomes included diversity of perspectives provided, better understanding their own health and decision-making and improving CER.
journal_name
J Comp Eff Resjournal_title
Journal of comparative effectiveness researchauthors
Saunders T,Mackie TI,Shah S,Gooding H,de Ferranti SD,Leslie LKdoi
10.2217/cer-2016-0025subject
Has Abstractpub_date
2016-08-01 00:00:00pages
487-97issue
5eissn
2042-6305issn
2042-6313journal_volume
5pub_type
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