title: Counselee participation in follow-up breast cancer genetic counselling visits and associations with achievement of the preferred role, cognitive outcomes, risk perception alignment and perceived personal control.
abstract: The purpose of the study was to assess the counselee participation in the follow-up visits, compared to the first visits, for breast cancer genetic counselling and to explore associations with counselees' achievement of their preferred role in decision making, information recall, knowledge, risk perception alignment and perceived personal control. First and follow-up visits for breast cancer genetic counselling of 96 counselees of a Dutch genetics center were videotaped (2008-2010). Counselees completed questionnaires before counselling (T1), after the follow-up visit (T2) and one year after the follow-up visit (T3). Consultations were rated with the Roter Interaction Analysis System (RIAS). Counselee participation was measured as the percentage of counselee utterances, the percentage of counselee questions and the interactivity (number of turns per minute). Follow-up visits had higher levels of counselee participation than first visits as assessed by the percentage of counselee talk, the interactivity and counselee questions. More counselee talk in the follow-up visit was related to higher achievement of the preferred role (T2) and higher perceived personal control (T3). Higher interactivity in the follow-up visit was related to lower achievement of the preferred role in decision making and lower information recall (T2). There were no significant associations with the percentage of questions asked and none of the participation measures was related to knowledge, risk perception alignment and perceived personal control (T2). In line with the interviewing admonishment 'talk less and listen more', the only assessment of counselee participation associated to better outcomes is the percentage of counselee talk. High interactivity might be associated with lower recall in breast cancer genetic counselees who are generally highly educated. However, this study was limited by a small sample size and a heterogeneous group of counselees. Research is needed on the interactions causing interactivity and its relationships with involvement in decision making and recall.
authors.affiliation: Department of Medical Genetics, University Medical Centre Utrecht, Postbus 85500, 3508 AB Utrecht, The Netherlands; NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands. Electronic address: a.albada@umcutrecht.nl.
authors.forename: Akke
authors.initials: A
authors.lastname: Albada
authors.affiliation: Department of Medical Genetics, University Medical Centre Utrecht, Postbus 85500, 3508 AB Utrecht, The Netherlands.
authors.forename: Margreet G E M
authors.initials: MG
authors.lastname: Ausems
authors.affiliation: NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands; Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands; Department of Health Sciences, Buskerud University College, Drammen, Norway.
authors.forename: Sandra
authors.initials: S
authors.lastname: van Dulmen
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D003657:Decision Making; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008875:Middle Aged; D010358:Patient Participation; D010465:Perception; D011369:Professional-Patient Relations; D018570:Risk Assessment
keywords: Breast cancer; Communication; Genetic counselling; Interaction analysis