Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? – a randomized study

Roshanai, Afsaneh Hayat; Rosenquist, Richard; Lampic, Claudia; Nordin, Karin

doi:10.1080/02841860903104137

Cited by 42 publications

(64 citation statements)

References 27 publications

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“…This supports the findings of a previous study on accuracy of recall of patients with cancer and their relatives, which found that information about cancer risk was the least accurately recalled. 25 However, in a study of first-degree relatives undergoing predictive testing for BRCA1/2 mutations, higher levels of Accuracy of information about a BRCA1/2 mutation C Jacobs et al accuracy about hereditary cancer than inheritance were reported. 16 For the cancer patients in this study, general genetics information would have been addressed during pre-test genetic counselling, whereas specific hereditary cancer information may not have been discussed in detail prior to learning the genetic test result.…”

Section: Discussionmentioning

confidence: 99%

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Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

et al. 2014

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This observational study aimed to (i) compare the accuracy of information recalled by patients and relatives following genetic counselling about a newly identified BRCA1/2 mutation, (ii) identify differences in accuracy of information about genetics and hereditary cancer and (iii) investigate whether accuracy among relatives improved when information was provided directly by genetics health professionals. Semistructured interviews following results from consultations with 10 breast/ovarian cancer patients and 22 relatives were audio-recorded and transcribed. Information provided by the genetics health professional was tracked through the families and coded for accuracy. Accuracy was analysed using the Wilcoxon Signed-Ranks test. Sources of information were tested using Spearman's rank-order correlation coefficient. Fifty-three percent of the information recalled by patients was accurate. Accuracy of recall among relatives was significantly lower than that among patients (P ¼ 0.017). Both groups recalled a lower proportion of information about hereditary cancer than about genetics (P ¼ 0.005). Relatives who learnt the information from the patient alone recalled significantly less accurate information than those informed directly by genetics health professionals (P ¼ 0.001). Following genetic counselling about a BRCA1/2 mutation, accuracy of recall was low among patients and relatives, particularly about hereditary cancer. Multiple sources of information, including direct contact with genetics health professionals, may improve the accuracy of information among relatives. INTRODUCTIONOne of the goals of genetic counselling in the context of familial cancer risk is to provide relevant information in order to enable informed decision-making about genetic testing and risk management. 1 Until recently, genetic testing has generally been offered to women with breast or ovarian cancer after completing cancer treatment. However, BRCA1/2 testing is increasingly offered to women with newly diagnosed breast cancer as part of their oncology management. 2 Thus, the information that the patient understands and recalls about a cancer-predisposing gene mutation may have an impact on treatment decisions as well as on the management of future cancer risks for herself and her relatives. 3,4 Responsibility for sharing information within families once a cancer-predisposing gene mutation has been identified generally falls on the individual with cancer who receives the initial mutation result. 5 Families prefer information to be passed on by the patient; 6 yet, although most families do appear to communicate genetic information, 5 patients do not always share all information with all at-risk relatives. 7,8 There are many barriers to family communication about hereditary cancer, 9 including lack of a close relationship, 6 reluctance to upset relatives, 10 youth or emotional readiness of relatives, 11 family culture, 8 perception of the risks and benefits of the information 12 and personal beliefs about the causes of genetic illness. 13...

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Section: Discussionmentioning

confidence: 99%

“…The mean number of information statements communicated to patients was 21 (range [16][17][18][19][20][21][22][23][24][25][26].…”

Section: Participantsmentioning

confidence: 99%

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

et al. 2014

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“…One of the roles of a genetic counsellor is to help individuals and families understand complex genetic information and share it with the family (Genetic Alliance 2009). Those receiving additional information are more satisfied, especially if this leads to better understanding (Roshanai et al 2009). This may indicate that the opportunity for a follow-up session to reinforce and expand on the information given could be valued and useful to counselees.…”

Section: Discussionmentioning

confidence: 99%

Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

et al. 2016

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While pedigree drawing software is often utilised in genetic services, the use of genealogical databases in genetic counselling is unusual. This is mainly because of the unavailability of such databases in most countries. Electronically generated pedigrees used for cancer genetic counselling in Iceland create pedigrees that automatically incorporate information from a large, comprehensive genealogy database and nationwide cancer registry. The aim of this descriptive qualitative study was to explore counsellees' experiences of genetic services, including family history taking, using these electronically generated pedigrees. Four online focus groups with 19 participants were formed, using an asynchronous posting method. Participants were encouraged to discuss their responses to questions posted on the website by the researcher. The main themes arising were motivation, information and trust, impact of testing and emotional responses. Most of the participants expressed trust in the method of using electronically generated pedigrees, although some voiced worries about information safety. Many experienced worry and anxiety while waiting for results of genetic testing, but limited survival guilt was noted. Family communication was either unchanged or improved following genetic counselling. The use of electronically generated pedigrees was well received by participants, and they trusted the information obtained via the databases. Age did not seem to influence responses. These results may be indicative of the particular culture in Iceland, where genealogical information is well known and freely shared. Further studies are needed to determine whether use of similar approaches to genealogical information gathering may be acceptable elsewhere.

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“…This theme comprises nine papers with studies focussing on professionals' practice [35][36][37] and specific interventions to assist consultands in the communication of information to at-risk relatives. [38][39][40][41][42][43] Features of practice included psychoeducational guidance and information aids that were used as adjuncts to clinical practice.…”

Section: Studies Included In Quantitative Synthesismentioning

confidence: 99%

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

et al. 2015

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Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in English, between January 1997 and May 2014. Of 2926 papers identified initially, 14 papers met the inclusion criteria for the review and were heterogeneous in design, setting and methods. Thematic data analysis has shown that dissemination of information within families is actively encouraged and supported by professionals. Three overarching themes emerged: (1) direct contact from genetic services: sending letters to relatives of mutation carriers; (2) professionals' encouragement of initially reluctant consultands to share relevant information with at-risk relatives and (3) assisting consultands in communicating genetic information to their at-risk relatives, which included as subthemes (i) INTRODUCTIONSupporting consultands of genetic services to effectively communicate information about genetic risks with their relatives is key to obtaining the full benefits of genetic health care. 1 Genetic health practitioners typically rely on the proband (or, for child probands, the parents) to inform relatives about their potential at-risk status. Passing on such information can be problematic, which may prevent relatives from making informed choices regarding risk management of the disease and life planning decisions. 2 Individual characteristics and patterns of family behaviour and relationships, disease characteristics and cultural factors may withhold or delay disclosure of genetic information to atrisk relatives, even when consultands see this as their personal responsibility. [3][4][5][6][7] Although guidelines recommend that professionals should not contact family members directly, that also state that professionals should actively encourage consultands to transmit relevant risk information to relatives and support them throughout the communication process; however, there is lack of clarity regarding how this should be done. 8,9 There has been some discussion on how to cascade information about genetic health risks to the relatives of patients with familial hyper-cholesterolaemia, including the active contacting of relatives directly by professionals, although this depends entirely upon information provided by the proband. 10 With genetic diseases increasingly treatable and preventable, some recommend a more proactive role of genetic professionals. 11,12

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Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? – a randomized study

Abstract: (2009) Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? -a randomized study, Acta Oncologica, 48:7, 999-1009,

Cited by 42 publications

References 27 publications

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

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