title: Young adult and parent stakeholder perspectives on participation in patient-centered comparative effectiveness research.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Institute for Clinical Research & Health Policy Studies, Tufts Medical Center, Boston, MA, USA.
authors.forename: Tully
authors.initials: T
authors.lastname: Saunders
authors.affiliation: Institute for Health, Health Care Policy & Aging Research, Rutgers University, New Brunswick, NJ, USA.
authors.forename: Thomas I
authors.initials: TI
authors.lastname: Mackie
authors.affiliation: Institute for Clinical Research & Health Policy Studies, Tufts Medical Center, Boston, MA, USA.
authors.forename: Supriya
authors.initials: S
authors.lastname: Shah
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Holly
authors.initials: H
authors.lastname: Gooding
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Sarah D
authors.initials: SD
authors.lastname: de Ferranti
authors.affiliation: Institute for Clinical Research & Health Policy Studies, Tufts Medical Center, Boston, MA, USA.|Tufts Clinical & Translational Science Institute, Boston, MA, USA.
authors.forename: Laurel K
authors.initials: LK
authors.lastname: Leslie
mesh_terms: D000293:Adolescent; D000328:Adult; D057186:Comparative Effectiveness Research; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents; D063868:Patient Outcome Assessment; D012108:Research Personnel; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: adolescents; comparative effectiveness research; patient-centered outcomes research; qualitative research; stakeholder engagement; young adults