title: "When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding hereditary breast and ovarian cancer risk.
abstract: OBJECTIVE
  To investigate BRCA-positive, unaffected patients' - referred to as previvors - information needs after testing positive for a deleterious BRCA genetic mutation.
  
  
  METHODS
  25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory.
  
  
  RESULTS
  Analysis revealed a theoretical model of previvors' information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages-personal/social knowledge and medical knowledge.
  
  
  CONCLUSIONS
  While previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors.
  
  
  CONCLUSIONS
  This model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors.
authors.affiliation: Department of Communication, University of South Florida, Tampa, FL, USA. Electronic address: marleahdeank@usf.edu.
authors.forename: Marleah
authors.initials: M
authors.lastname: Dean
authors.affiliation: Department of Communication Studies, Northwestern University, Chicago, IL, USA.
authors.forename: Courtney L
authors.initials: CL
authors.lastname: Scherr
authors.affiliation: Department of Communication, University of South Florida, Tampa, FL, USA.
authors.forename: Meredith
authors.initials: M
authors.lastname: Clements
authors.affiliation: Department of Communication, University of South Florida, Tampa, FL, USA.
authors.forename: Rachel
authors.initials: R
authors.lastname: Koruo
authors.affiliation: Department of Communication, University of South Florida, Tampa, FL, USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Martinez
authors.affiliation: Department of Communication Studies, Northwestern University, Chicago, IL, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Ross
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003657:Decision Making; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic; D036301:Qualitative Research
keywords: BRCA; Decision-making; Genetics; Hereditary breast and ovarian cancer; Information; Previvors; Uncertainty