title: A pre-visit tailored website enhances counselees' realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling.
abstract: 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 gene(ca)), 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 gene(ca) counselees (n = 101) better knew what to expect of their first visit (χ(2) = 4.43; P = .04) and less often showed unrealistic expectations about possibilities for DNA-testing (χ(2) = 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.
authors: NIVEL (Netherlands Institute for Health Services Research), P.O. Box 1568, 3500 BN, Utrecht, The Netherlands. a.albada@nivel.nl
authors: Akke
authors: A
authors: Albada
authors: Sandra
authors: S
authors: van Dulmen
authors: Dick
authors: D
authors: Lindhout
authors: Jozien M
authors: JM
authors: Bensing
authors: Margreet G E M
authors: MG
authors: Ausems
mesh_terms: D000328:Adult; D000368:Aged; D019313:BRCA1 Protein / Q000235:genetics; D024682:BRCA2 Protein / Q000235:genetics; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D003142:Communication; D005260:Female; D005817:Genetic Counseling / Q000379:methods* / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D006301:Health Services Needs and Demand; D006579:Heterozygote; D006801:Humans; D020407:Internet; D008875:Middle Aged; D009154:Mutation / Q000235:genetics; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011369:Professional-Patient Relations; D011379:Prognosis; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human