CounselingFollow-up effects of a tailored pre-counseling website with question prompt in breast cancer genetic counseling
Introduction
Breast cancer patients and their relatives can be referred to genetic counseling to receive education about their breast cancer risk and risk management advice [1]. Genetic counseling aims to enhance feelings of personal control [2] and adherence to surveillance recommendations and to lower breast cancer worry [3]. To make (informed) decisions, counselees need to correctly recall the provided risk information, the surveillance recommendations and the advice on how to communicate the test results with relatives [4], [5].
Breast cancer genetic counseling has proven to be reasonably effective in achieving improvements in counselees’ level of breast cancer worry [6] and in their perceived personal control [7], [8]. However, counselees’ recall of information from the counseling and the transmission of this information to their relatives are still impaired [9], [10]. Furthermore, while most counselees intend to adhere to the surveillance advice [11], their actual surveillance uptake remains suboptimal [12]. Moreover, genetic counseling appears to lead to improvements in counselees’ knowledge about breast cancer genetics [12] and in their risk perception but anxiety levels only show a modest decrease [7], [13], [14], [15]. Besides, after genetic counseling most counselees continue to overestimate their risks [7], [13], [16].
To enhance breast cancer genetic counseling outcomes, counselees have been provided with pre-counseling information. Such information shows to improve counselees’ satisfaction [17] and their levels of knowledge after the first visit [18], [19]. Pre-counseling information might become even more effective by tailoring such information to the individual, since tailored information is better recalled than generic information [20], [21]. Apart from tailored information, a pre-counseling Question Prompt (QP) on which counselees can write their questions might have additional effect by stimulating more active counselee communication during the counseling [Henselmans 22] and thereby enhancing counselees’ recall of information [23], [24], [25]. To this purpose, the web-based intervention E-info geneca was developed with information about, for instance, the procedure of counseling and DNA-testing and emotional consequences [26]. The information was computer-tailored [20] to individual counselee's breast cancer status, her risk (based on the cancer family history), age and having children [27]. Additionally, the website provided a blank QP where counselees could write their questions and gave communication advice for the consultations, e.g. ‘please pose all your questions and ask for clarification’ [28].
In evaluating the effects of pre-counseling information, relevant long term key outcomes of genetic counseling, i.e. information recall, breast cancer worry, perceived personal control and adherence to surveillance recommendations, have not yet been studied. Also, counselees’ experience with genetic counseling has not been considered, while this is an important outcome to involve the counselees’ perspective [2]. Therefore, an RCT was conducted to test the effects of the pre-counseling, preparatory website E-info geneca. Prior papers about this study showed that intervention group counselees were better prepared for the counseling, in terms of knowledge of breast cancer and heredity and in terms of information needs, after being provided with access to the website [29]. In their first visit, these counselees showed more assertive communication, such as orienting and paraphrasing statements, than counselees in the usual care (UC) group [30]. However, counselees did not ask more questions [30].
As a result of the increased levels of pre-counseling knowledge and more assertive communication during the first visit, counselees might be able to better process the information [31], [32]. This might result in higher levels of knowledge, information recall and a more positive evaluation of the counseling. Increased recall of information received in the final consultation might be beneficial for the alignment of the counselees’ risk perception with the counselor's estimation, breast cancer worry and adherence to the surveillance recommendations. More positive experiences with the counseling have been shown to be associated with improved perceived personal control and lower anxiety rates [5], [33].
The present paper focuses on the intermediate and long-term effects of E-info geneca. We hypothesize that the intervention group will show better outcomes than the usual care group for the key outcomes of genetic counseling, i.e. information recall post-counseling and breast cancer worry, perceived personal control and adherence, 1 year post-counseling. We also hypothesize that counselees in the intervention group will have higher scores on satisfaction, experiences with the counseling, knowledge, risk perception alignment and lower rates of anxiety at 1 week and 1 year post-counseling.
Section snippets
Study design
This study was conducted at the department of Medical Genetics of the University Medical Center (UMC) Utrecht. The study was approved by the institutional medical ethical committee and registered in the Dutch Trial Register (ISRCTN82643064). All new consecutive counselees, aged 18 years or older, who were the first in their family to seek breast cancer genetic counseling, were sent information about the study and an opt-out form from February 2008 to April 2010. Counselees were ineligible if
Response
Few counselees were ineligible because of lack of internet or email access (24 of 371; 6.5%; Fig. 1). The response was 58.6%. Half of the decliners gave a reason (72 of 139; 50.4%). Most preferred the visit not to be videotaped (48 of 72; 66.7%). There were no significant differences between participants and decliners in age, disease status, family history of cancer and referral pathway.
Counselee characteristics
As shown in Table 1, UC and intervention group respondents were similar with regard to all background
Discussion
This study suggests that pre-counseling web-based education (E-info geneca), providing tailored information and a QP, leads to improvements in experiences with genetic counseling for hereditary breast cancer and perceived personal control 1 year post-counseling. Counselees in the intervention group were also more satisfied about the final visit compared to the UC group. As these results reach further than only cognitive outcomes and concern long term effects, the current study extends findings
Acknowledgements
We want to thank all counselees who participated in this study. We also owe our gratitude to the clinical geneticists, genetic counselors 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, secretary of the department of Medical Genetics and Doortje Saya, secretary of Nivel, for organizing many practicalities of the study. This
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