title: Counselees' Expressed Level of Understanding of the Risk Estimate and Surveillance Recommendation are Not Associated with Breast Cancer Surveillance Adherence.
abstract: We studied counselees' expressed understanding of the risk estimate and surveillance recommendation in the final consultation for breast cancer genetic counseling in relation with their risk perception, worry and cancer surveillance adherence 1 year post-counseling. Consecutive counselees were included from 2008 to 2010. Counselees with an indication for diagnostic DNA-testing for themselves or a breast cancer affected relative were requested to complete online questionnaires before and after counseling and one year after counseling (N = 152-124). Self-reported surveillance was compared to surveillance recommendations. Consultations were videotaped. Counselees' reactions to the risks and recommendations were coded. Statements about the risk perception and surveillance intentions of breast cancer unaffected counselees were transcribed. Associations with outcomes were explored. Almost all breast cancer unaffected counselees (>90 %) reacted to their risk estimate with an utterance indicating understanding and this reaction was not significantly associated with their post-visit risk perception alignment. Over one-third (38.6 %) overestimated their risk post-counseling. Few counselees (5.8 %) expressed surveillance intentions. One year after counseling, about three-quarters (74.0 %) of the breast cancer unaffected counselees had adhered to the surveillance recommendation. Almost one-quarter (23.3 %) had performed more mammograms/MRI scans than recommended, which was associated with prior mammography uptake (n = 47; X (2)  = 5.2; p = .02). Counselees' post-counseling overestimation of their risk, high levels of worry and high surveillance uptake were not reflected in their reactions to the counselor's information during the final visit.
authors: Department of Medical Genetics, University Medical Centre Utrecht, Utrecht, The Netherlands. a.albada@umcutrecht.nl.
authors: Akke
authors: A
authors: Albada
authors: 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 and Vestfold University College, Drammen, Norway.
authors: Sandra
authors: S
authors: van Dulmen
authors: NIVEL (Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
authors: Henrietta
authors: H
authors: Dijkstra
authors: Department of Medical Genetics, University Medical Centre Utrecht, Utrecht, The Netherlands.
authors: Ivette
authors: I
authors: Wieffer
authors: Department of Surgery, University Medical Centre Utrecht, Utrecht, The Netherlands.
authors: Arjen
authors: A
authors: Witkamp
authors: Department of Medical Genetics, University Medical Centre Utrecht, Utrecht, The Netherlands.
authors: Margreet G E M
authors: MG
authors: Ausems
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D055088:Early Detection of Cancer / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033182:Intention; D008279:Magnetic Resonance Imaging; D008327:Mammography / Q000523:psychology*; D008875:Middle Aged; D010349:Patient Compliance / Q000523:psychology; D012306:Risk; D018570:Risk Assessment; D011795:Surveys and Questionnaires
keywords: Adherence; Breast cancer; Genetic counseling; Mammography; Risk perception; Surveillance