title: The need for decision and communication aids: a survey of breast cancer survivors.
abstract: BACKGROUND
  Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown.
  
  
  OBJECTIVE
  To quantify the need for decision support among breast cancer survivors.
  
  
  METHODS
  We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support.
  
  
  RESULTS
  We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-making, information, and questions asked and answered. Respondents endorsed the need for assistance with obtaining information, listing questions, taking notes, and making audio-recordings of visits.
  
  
  CONCLUSIONS
  The respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias.
  
  
  CONCLUSIONS
  Cancer survivors expressed gaps in their care with respect to reviewing information, asking questions, obtaining answers, and making decisions. Implementing decision and communication aids immediately upon diagnosis, when treatment decisions are being made, would address these gaps.
authors.affiliation: Institute for Health Policy Studies, University of California, San Francisco, California, USA.
authors.forename: Jeffrey K
authors.initials: JK
authors.lastname: Belkora
authors.affiliation: Public Health Research Scientist, Fairfax, Virginia, USA.
authors.forename: Melissa F
authors.initials: MF
authors.lastname: Miller
authors.affiliation: Research Partnership, Horsham, Pennsylvania, USA.
authors.forename: Kasey
authors.initials: K
authors.lastname: Dougherty
authors.affiliation: Research & Training Institute, Cancer Support Community, Philadelphia, Pennsylvania, USA.
authors.forename: Christopher
authors.initials: C
authors.lastname: Gayer
authors.affiliation: Research & Training Institute, Cancer Support Community, Philadelphia, Pennsylvania, USA.
authors.forename: Mitch
authors.initials: M
authors.lastname: Golant
authors.affiliation: Research & Training Institute, Cancer Support Community, Philadelphia, Pennsylvania, USA. joanne@cancersupportcommunity.org.
authors.forename: Joanne S
authors.initials: JS
authors.lastname: Buzaglo
keywords: breast cancer; communication aids; decision aids; decision support; office visits; shared decision making; visit preparation