title: Perceived economic burden associated with an inherited cardiac condition: a qualitative inquiry with families affected by arrhythmogenic right ventricular cardiomyopathy.
abstract: Significant gaps remain in the literature on the economic burden of genetic illness. We explored perceived economic burden associated with one inherited cardiac condition, arrhythmogenic right ventricular cardiomyopathy (ARVC).
  
  
  
  Semistructured interviews were held with individuals from families affected by ARVC. Data on the perceived financial and economic impacts of ARVC were used to identify emerging categories and themes using the method of constant comparison.
  
  
  
  Data analysis revealed four themes that described participants' perceptions of the economic impact ARVC had on them and their families: (i) economic impact during childhood, (ii) impact on current and future employment, (iii) impact on current and future financial well-being, and (iv) no perceived economic impact.
  
  
  
  This study is the first to explore the economic burden of ARVC from the perspective of affected families. It revealed a number of perceived burdens, from employment and career choices to worry about insurance for self and children, decreased household spending, and the need for childhood employment. Findings highlight potential areas of discussion for genetic counseling sessions, as well as areas for future research.Genet Med 18 6, 584-592.
authors.affiliation: Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.
authors.forename: Holly
authors.initials: H
authors.lastname: Etchegary
authors.affiliation: Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Glenn
authors.initials: G
authors.lastname: Enright
authors.affiliation: Community Health and Humanities, Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.
authors.forename: Rick
authors.initials: R
authors.lastname: Audas
authors.affiliation: Community Health and Humanities, Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.
authors.forename: Daryl
authors.identifier: 0000-0001-9478-9644
authors.initials: D
authors.lastname: Pullman
authors.affiliation: Discipline of Genetics, Memorial University, St. John's, Newfoundland, Canada.
authors.forename: Terry-Lynn
authors.initials: TL
authors.lastname: Young
authors.affiliation: Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.|Discipline of Genetics, Memorial University, St. John's, Newfoundland, Canada.
authors.forename: Kathy
authors.initials: K
authors.lastname: Hodgkinson
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D019571:Arrhythmogenic Right Ventricular Dysplasia / Q000191:economics* / Q000453:epidemiology / Q000235:genetics; D016757:Death, Sudden, Cardiac / Q000453:epidemiology*; D004562:Electrocardiography / Q000191:economics; D005190:Family; D005260:Female; D005817:Genetic Counseling / Q000191:economics*; D030342:Genetic Diseases, Inborn / Q000191:economics* / Q000453:epidemiology / Q000235:genetics; D006801:Humans; D008297:Male; D008875:Middle Aged