title: Development of a communication protocol for telephone disclosure of genetic test results for cancer predisposition.
abstract: BACKGROUND
  Dissemination of genetic testing for disease susceptibility, one application of "personalized medicine", holds the potential to empower patients and providers through informed risk reduction and prevention recommendations. Genetic testing has become a standard practice in cancer prevention for high-risk populations. Heightened consumer awareness of "cancer genes" and genes for other diseases (eg, cardiovascular and Alzheimer's disease), as well as the burgeoning availability of increasingly complex genomic tests (ie, multi-gene, whole-exome and -genome sequencing), has escalated interest in and demand for genetic risk assessment and the specialists who provide it. Increasing demand is expected to surpass access to genetic specialists. Thus, there is urgent need to develop effective and efficient models of delivery of genetic information that comparably balance the risks and benefits to the current standard of in-person communication.
  
  
  OBJECTIVE
  The aim of this pilot study was to develop and evaluate a theoretically grounded and rigorously developed protocol for telephone communication of BRCA1/2 (breast cancer) test results that might be generalizable to genetic testing for other hereditary cancer and noncancer syndromes.
  
  
  METHODS
  Stakeholder data, health communication literature, and our theoretical model grounded in Self-Regulation Theory of Health Behavior were used to develop a telephone communication protocol for the communication of BRCA1/2 genetic test results. Framework analysis of selected audiotapes of disclosure sessions and stakeholders' feedback were utilized to evaluate the efficacy and inform refinements to this protocol.
  
  
  RESULTS
  Stakeholder feedback (n=86) and audiotapes (38%, 33/86) of telephone disclosures revealed perceived disadvantages and challenges including environmental factors (eg, non-private environment), patient-related factors (eg, low health literacy), testing-related factors (eg, additional testing needed), and communication factors (eg, no visual cues). Resulting modifications to the communication protocol for BRCA1/2 test results included clarified patient instructions, scheduled appointments, refined visual aids, expanded disclosure checklist items, and enhanced provider training.
  
  
  CONCLUSIONS
  Analyses of stakeholders' experiences and audiotapes of telephone disclosure of BRCA1/2 test results informed revisions to communication strategies and a protocol to enhance patient outcomes when utilizing telephone to disclose genetic test results.
authors.affiliation: Department of Medicine, Division of Hematology-Oncology, Center for Clinical Cancer Genetics and Global Health, University of Chicago, Chicago, IL, United States. lpatrickmiller@medicine.bsd.uchicago.edu.
authors.forename: Linda J
authors.identifier: http://orcid.org/0000-0003-4315-8678
authors.initials: LJ
authors.lastname: Patrick-Miller
authors.forename: Brian L
authors.identifier: http://orcid.org/0000-0002-1633-799X
authors.initials: BL
authors.lastname: Egleston
authors.forename: Dominique
authors.identifier: http://orcid.org/0000-0001-6374-0151
authors.initials: D
authors.lastname: Fetzer
authors.forename: Andrea
authors.identifier: http://orcid.org/0000-0003-4782-8908
authors.initials: A
authors.lastname: Forman
authors.forename: Lisa
authors.identifier: http://orcid.org/0000-0001-8949-8746
authors.initials: L
authors.lastname: Bealin
authors.forename: Christina
authors.identifier: http://orcid.org/0000-0001-6389-3158
authors.initials: C
authors.lastname: Rybak
authors.forename: Candace
authors.identifier: http://orcid.org/0000-0003-1288-9321
authors.initials: C
authors.lastname: Peterson
authors.forename: Melanie
authors.identifier: http://orcid.org/0000-0001-5443-4670
authors.initials: M
authors.lastname: Corbman
authors.forename: Julio
authors.identifier: http://orcid.org/0000-0003-1669-6535
authors.initials: J
authors.lastname: Albarracin
authors.forename: Evelyn
authors.identifier: http://orcid.org/0000-0001-9447-1644
authors.initials: E
authors.lastname: Stevens
authors.forename: Mary B
authors.identifier: http://orcid.org/0000-0002-7490-6038
authors.initials: MB
authors.lastname: Daly
authors.forename: Angela R
authors.identifier: http://orcid.org/0000-0001-9607-6402
authors.initials: AR
authors.lastname: Bradbury
keywords: cancer risk assessment; communication; genetic testing; self-regulation theory of health behavior; telemedicine; test result disclosure