NDLI: A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling

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A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling

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A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling

Content Provider	Springer Nature Link
Author	Albada, Akke Dulmen, Sandra Lindhout, Dick Bensing, Jozien M. Ausems, Margreet G. E. M.
Copyright Year	2011
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 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.
Starting Page	85
Ending Page	95
Page Count	11
File Format	PDF
ISSN	13899600
Journal	Familial Cancer
Volume Number	11
Issue Number	1
e-ISSN	15737292
Language	English
Publisher	Springer Netherlands
Publisher Date	2011-09-07
Publisher Place	Dordrecht
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Computer-tailored BRCA1/2 Patient education Communication Genetic counselling Cancer Research Biomedicine general Human Genetics Epidemiology
Content Type	Text
Resource Type	Article
Subject	Genetics Cancer Research Genetics (clinical) Oncology

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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