Women's preferences and consultants' communication of risk in consultations about familial breast cancer: impact on patient outcomes

Lobb, Elizabeth; Butow, Phyllis; Meiser, Bettina; Barratt, Alexandra; Gaff, Clara; Young, Mary‐Anne; Kirk, Judy; Gattas, Michael; Gleeson, Margaret; Tucker, Kathy

doi:10.1136/jmg.40.5.e56

Cited by 50 publications

(56 citation statements)

References 47 publications

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“…The discrepancies between two alternative ways of presenting that information may suggest a lack of clarity in the questions or difficulties with numerical notation. Communication of risk in the setting of a breast cancer family clinic is well recognised as a problem area, with no method of communication proven to achieve accurate understanding (Watson et al, 1998;Cull et al, 1999;Braithwaite et al, 2004;Lobb et al, 2005). Furthermore, the free text comments from a number of respondents showed that, despite scrupulous avoidance of the term 'low risk' in oral and written communications from the clinic, some feel inappropriately reassured, to the extent of believing their risk may be below that of the general population.…”

Section: Discussionmentioning

confidence: 99%

Familial breast cancer: management of ‘lower risk’ referrals

et al. 2006

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Up to 40% of referrals from primary care to 'breast cancer family clinics' prove to be of women whose assessed risk falls below the guidelines' threshold for management in secondary or tertiary care, despite recommendations that they should be screened out at primary care level. A randomised trial, involving 87 such women referred to the Tayside Familial Breast Cancer Service compared two ways of communicating risk information, letter or personal interview. Both were found to be acceptable to referred women and to their family doctors, although the former expressed a slight preference for interview. Only four women returned to their family doctors with continuing concerns about breast cancer. Nevertheless, understanding of information provided by either route was unsatisfactory, with apparent confusion about both absolute and relative risks of breast cancer. Substantial minorities appear to believe that they are at no increased risk at all, or even below the population level of risk, while others remain convinced that their personal risk has been underestimated. Family history record forms, completed by the referred women, preferably with the assistance of relatives, are crucial to full assessment of familial risk but one quarter of women referred to the Tayside Familial Breast Cancer Service currently do not complete and return these forms ahead of their clinic appointment. Further collaboration between primary care and the Breast Cancer Family Service is required to improve provision for concerned women whose risks fall below the threshold for special surveillance and to maximise effective use of the family history record form.

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Section: Discussionmentioning

confidence: 99%

Familial breast cancer: management of ‘lower risk’ referrals

et al. 2006

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“…Further research is necessary to assess whether counselees may indeed prefer to discuss information that is specifically relevant to them. The total number of different risk expressions was unrelated to postcounseling accuracy of risk perceptions, as Lobb et al 7 found after initial visits. Notably, postcounseling accuracy was not related to the absolute number of general or counseleespecific risks that were stated, but it was associated with the proportion of counselee-specific versus general information.…”

Section: Discussionmentioning

confidence: 72%

“…It was designed to code (yes/no) whether the following risks were mentioned: 1) general population probabilities of breast cancer, ovarian cancer, and hereditary breast cancer, i.e., proportion of breast cancer in the general population caused by a BRCA1/2 mutation; 2) BRCA1/2-related probabilities of breast cancer, ovarian cancer, detecting a BRCA1/2 mutation with a diagnostic DNA test, inheriting or passing on a mutation, and carrying a de novo BRCA1/2 mutation; and 3) counselee-specific probabilities of breast cancer, ovarian cancer, and identifying a mutation in the counselee's family (Table 2). In contrast to Lobb et al, 7 counselees' hypothetical cancer risks if a mutation were detected were coded as general BRCA1/2-related risks.…”

Section: Methodsmentioning

confidence: 99%

“…Sum scores ranged from 8 to 80, with high scores indicating high satisfaction. 23 Verbal risk communication was rated using a checklist adapted from Lobb et al 3,7 for which a detailed coding manual was developed. It was designed to code (yes/no) whether the following risks were mentioned: 1) general population probabilities of breast cancer, ovarian cancer, and hereditary breast cancer, i.e., proportion of breast cancer in the general population caused by a BRCA1/2 mutation; 2) BRCA1/2-related probabilities of breast cancer, ovarian cancer, detecting a BRCA1/2 mutation with a diagnostic DNA test, inheriting or passing on a mutation, and carrying a de novo BRCA1/2 mutation; and 3) counselee-specific probabilities of breast cancer, ovarian cancer, and identifying a mutation in the counselee's family (Table 2).…”

Section: Methodsmentioning

confidence: 99%

“…2,9,11 Studies assessing the preferred form of risk presentation among women counseled for suspected hereditary breast cancer found a majority having a preference for a specific format. 7,12 No clear preference was agreed upon though, 7 suggesting that counselors should convey risks in various formats. Moreover, clinical risk communication can be viewed as a two-way process.…”

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confidence: 99%

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Risk communication in completed series of breast cancer genetic counseling visits

Pieterse

Dulmen

Dijk

et al. 2006

Genetics in Medicine

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Purpose: There is no consensus on how best to communicate risk in breast cancer genetic counseling. We studied risk communication in completed series of counseling visits and assessed associations with counselees' postcounseling risk perception and satisfaction. Methods: Pre-and postcounseling questionnaires and videorecordings of all visits were available for 51 affected and unaffected women from families with no known BRCA1/2 mutation, who fulfilled criteria for DNA testing. We developed a checklist for assessing risk communication and counselors' behaviors. Results: General risks were mainly communicated in initial visits, while counselee-specific risks were discussed mainly in concluding visits. The risks discussed most often were conveyed only numerically or qualitatively, and most were only stated positively or negatively. Counselors regularly helped counselees to understand the information, but seldom built on counselees' pre-existing perspective. Counselees' breast cancer risk perception after counseling was unrelated to whether this risk had been explicitly stated. The number of general risks discussed was negatively associated with counselees' satisfaction about counseling. Key Words: risk, counseling, breast cancer, communicationThe emphasis in cancer genetic counseling is on enhancing accurate and useful risk perceptions 1 as a means to promoting appropriate risk management. 2 In the case of breast cancer genetic counseling, various probability estimations are implicated, including breast cancer risk in the general population, estimation of whether the breast cancer is hereditary, breast cancer risk for mutation carriers, and the risk for counselee or relatives to develop or redevelop breast or ovarian cancer. Counselors may communicate more or less of these risks to counselees. One of the few studies on actual risk communication in breast cancer genetic counseling suggests that in individual initial visits, counselors provide only a few facts about risk. 3 Counselees' persisting inaccurate risk perceptions after counseling 4 -8 underlines the need for more insight into actual risk communication, and what is conveyed during the total counseling process rather than during initial visits only.There is no consensus about 'best practices' for how health care providers should present health-related risks 9,10 and there is still debate about what form of presentation counselees can most easily understand. 2,9,11 Studies assessing the preferred form of risk presentation among women counseled for suspected hereditary breast cancer found a majority having a preference for a specific format. 7,12 No clear preference was agreed upon though, 7 suggesting that counselors should convey risks in various formats. Moreover, clinical risk communication can be viewed as a two-way process. 13 To be able to inform counselees in a personally meaningful way means that their preexisting risk perceptions, 14,15 risk beliefs, 16 and preferred risk format have to be identified first.The aim of this study is to characterize ac...

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Communicating Evidence for Participatory Decision Making

Epstein¹

2004

JAMA

531

333

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HYSICIANS SHOULD CREATE COLlaborative partnerships with patients (and families) in which clinical decisions are made using the best available evidence, consistent with patients' values, goals, and capabilities. 1 However, this ideal is rarely achieved. Physicians typically spend less than 1 minute out of a 20-minute visit discussing treatment and planning. 2 Informed decision making occurs in only 9% of outpatient office visits, and physicians ask patients if they have questions in less than half. 3,4 Although patients generally want more information about their illnesses, 5 they recall only a fraction of the information physicians transmit. 2,6 Communicating evidence to patients has practical, relational, and ethical goals. Informed patients are more likely to participate actively in their care, make wiser decisions, come to a common understanding with their physicians, and adhere more fully to treatment. Communicating evidence can transform a physician-dominated relationship into one that is relationship-centered. 7 Patients have a right to understand their illness, prognosis, and treatment options, regardless of whether they choose to participate in decisions. 8 Patients care about how evidence is presented. Elwyn et al 9 published 2 studies in which focus groups of physician-educators and residents defined skills for shared decision making, including communicating evidence. These skills were used rarely. Participants suggested that the decision options be presented before eliciting the patient's preferred role in the decision or determining the preferred formats for further discussion. The focus groups in the study by Ford et al 10 included a va

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Women's preferences and consultants' communication of risk in consultations about familial breast cancer: impact on patient outcomes

Cited by 50 publications

References 47 publications

Familial breast cancer: management of ‘lower risk’ referrals

Familial breast cancer: management of ‘lower risk’ referrals

Risk communication in completed series of breast cancer genetic counseling visits

Communicating Evidence for Participatory Decision Making

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