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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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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.

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Acknowledgments

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).

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Authors and Affiliations

  1. NIVEL (Netherlands Institute for Health Services Research), P.O. Box 1568, 3500 BN, Utrecht, The Netherlands

    Akke Albada, Sandra van Dulmen & Jozien M. Bensing

  2. Department of Medical Genetics, University Medical Center Utrecht, Utrecht, The Netherlands

    Dick Lindhout & Margreet G. E. M. Ausems

  3. Department of Health Psychology, Utrecht University, Utrecht, The Netherlands

    Jozien M. Bensing

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  1. Akke Albada
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  2. Sandra van Dulmen
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  3. Dick Lindhout
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  4. Jozien M. Bensing
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  5. Margreet G. E. M. Ausems
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Correspondence to Akke Albada.

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Albada, A., van Dulmen, S., Lindhout, D. et al. A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling. Familial Cancer 11, 85–95 (2012). https://doi.org/10.1007/s10689-011-9479-1

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