title: Treatment decision making for adolescents with familial hypercholesterolemia: Role of family history and past experiences.
abstract: BACKGROUND
  Adolescents and young adults (AYAs) with familial hypercholesterolemia (FH) are at high risk for underdiagnosis and inadequate treatment. Yet, little is known about the factors that influence the medical decision making of AYAs with FH and their families.
  
  
  OBJECTIVE
  This study explores how family medical history, family narratives of medical experiences, and AYA medical experiences together function as "experiential evidence" and influence screening and treatment decisions.
  
  
  METHODS
  Twenty-four parents and AYAs affected by FH from a pediatric preventive cardiology practice responded to a survey and a semistructured qualitative interview. Transcribed interviews were analyzed using a modified grounded theory approach. Study design, instruments, and interpretation of results were informed by a 20-member stakeholder panel.
  
  
  RESULTS
  AYAs and parents reported extensive personal and family experiences with cholesterol and cardiovascular conditions and treatments, sometimes distinct from FH, which were used as evidence to inform their own perceptions of FH risk and treatment. This experiential evidence impacted perceptions of: (1) hereditary risk for FH diagnoses, (2) risk for future cardiovascular disease, (3) risks associated with treatments, and (4) capacity to comply with recommended treatments. Although experiences of family members initially informed screening and treatment decisions, the subsequent personal experiences of AYAs led to new experiential evidence that informed future decisions.
  
  
  CONCLUSIONS
  Family cardiovascular history related to and distinct from FH influenced screening and treatment decisions of AYAs and parents affected by FH. Additional clinical assessment of personal and family medical experiences may enhance understanding of the decision-making processes among AYAs and ultimately improve adherence to screening and treatment recommendations.
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, USA. Electronic address: tmackie@tuftsmedicalcenter.org.
authors.forename: Thomas I
authors.initials: TI
authors.lastname: Mackie
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, USA.
authors.forename: Lisa L
authors.initials: LL
authors.lastname: Tse
authors.affiliation: Department of Cardiology, Boston Children's Hospital Harvard Medical School, Boston, MA, USA.
authors.forename: Sarah D
authors.initials: SD
authors.lastname: de Ferranti
authors.affiliation: Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Heather R
authors.initials: HR
authors.lastname: Ryan
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Tufts Clinical and Translational Science Institute, Tufts University School of Medicine, Boston, MA, USA.
authors.forename: Laurel K
authors.initials: LK
authors.lastname: Leslie
mesh_terms: D000293:Adolescent; D000328:Adult; D002784:Cholesterol / Q000097:blood; D008078:Cholesterol, LDL / Q000097:blood; D003657:Decision Making; D005260:Female; D006801:Humans; D006938:Hyperlipoproteinemia Type II / Q000097:blood / Q000453:epidemiology / Q000235:genetics* / Q000628:therapy*; D008297:Male; D010290:Parents; D012307:Risk Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D008078:Cholesterol, LDL; D002784:Cholesterol
keywords: Adolescent; Cholesterol; Decision making; Experiential evidence; Familial hypercholesterolemia