A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling
- 338 Downloads
Counselees who are the first in their family to request breast cancer genetic counselling often don’t know what to expect or have unrealistic expectations of genetic counselling. Receiving tailored information might help them to prepare for their first visit. We conducted a study of the effects of a pre-visit website providing computer-tailored information (E-info geneca), on counselees’ expectations, knowledge about breast cancer and heredity and information needs. Counselees were randomized to receive usual care (UC) or UC plus website. All counselees completed a baseline questionnaire and those randomized to the intervention group also completed a questionnaire after having viewed the website. After having accessed E-info geneca counselees (n = 101) better knew what to expect of their first visit (χ2 = 4.43; P = .04) and less often showed unrealistic expectations about possibilities for DNA-testing (χ2 = 4.84; P = .03) than counselees in the UC group (n = 89). In addition, the website increased counselees’ knowledge of breast cancer and heredity (B = .23; P = .003) and lowered their information needs (B = −.16; P = .000) compared to the UC group. Especially, information concerning procedural aspects and emotional consequences of genetic counselling was considered less important. This study showed that counselees know more and need less when they are provided with extended pre-visit information through a tailored website and counselees enter the visit with more realistic expectations of genetic counselling. This might facilitate and focus communication within the subsequent consultation.
KeywordsComputer-tailored BRCA1/2 Patient education Communication Genetic counselling
We want to thank all counselees who participated in this study. We also owe our gratitude to the clinical geneticists, genetic counsellors and residents in clinical genetics of the department of Medical Genetics of the UMC Utrecht, in particular, Angela Schoemaker and Ivette Wieffer who arranged the logistics of the study. We are grateful to Anita Wallet and Doortje Saya for organizing many practicalities of the study. This study was funded by a grant from the Dutch Cancer Society (Nivel 2006-3469).
- 17.Meiser B, Butow P, Baratt A, Gattas M, Gaff C, Haan E, Gleeson M, Dudding T, Tucker K, the Psychological Impact Collaborative Group (2001) Risk perceptions and knowledge of breast cancer genetics in women at increased risk of developing hereditary breast cancer. Psychol Health 16(3):297–311CrossRefGoogle Scholar
- 38.Green MJ, Peterson SK, Baker MW, Harper GR, Friedman LC, Rubinstein WS, Mauger DT (2004) Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. JAMA 292(4):442–452PubMedCrossRefGoogle Scholar
- 39.Green MJ, Peterson SK, Baker MW, Friedman LC, Harper GR, Rubinstein WS, Peters JA, Mauger DT (2005) Use of an educational computer program before genetic counseling for breast cancer susceptibility: effects on duration and content of counseling sessions. Genet Med 7(4):221–229PubMedCrossRefGoogle Scholar
- 43.STOET, Association Clinical Genetics Netherlands, Working group Clinical Oncogenetics (2005) Hereditary tumours: guidelines for diagnostics and prevention. [Erfelijke tumoren: Richtlijnen voor diagnostiek en preventie]. STOET, LeidenGoogle Scholar
- 45.Albada A, Ausems MGEM, Otten R, Bensing JM, Van Dulmen S (2011) Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counselling. J Cancer Educ (in press)Google Scholar
- 50.RVZ (2010) Health 2.0. Dutch Council for Public Health and Health Care (RVZ), The HagueGoogle Scholar
- 51.US Census Bureau (2009) Internet use in the United States. http://www.census.gov/population/www/socdemo/computer/2009.html. Cited 20 Dec 2010
- 56.Wakefield CE, Meiser B, Homewood J, Peate M, Taylor A, Lobb E, Kirk J, Young MA, Williams R, Dudding T, Tucker K (2008) A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk. Breast Cancer Res Treat 107(2):289–301PubMedCrossRefGoogle Scholar
- 57.Vos J, Menko F, Jansen AM, Van Asperen CJ, Stiggelbout AM, Tibben A (2011) A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer 10(1):87–96PubMedCrossRefGoogle Scholar
- 59.Pieterse A, Ausems M, Spreeuwenberg P, Van Dulmen S (2011) Longer-term influence of breast cancer genetic counseling on cognitions and distress: smaller benefits for affected versus unaffected women. Patient Educ Couns (in press)Google Scholar
- 60.Colvin Clark RC, Mayer RE (2008) E-learning and the science of instruction. Wiley, San FranciscoGoogle Scholar