[Show abstract][Hide abstract] ABSTRACT: One hundred and twenty-eight women undergoing assessment for genetic risk of breast/ovarian cancer completed questionnaires
at entry into the assessment process and following risk provision. The key variable of interest was the level of intrusive
worries at each time, and factors associated with the level of intrusive worries following risk provision. Based on the CARA
model (Renner, Pers Soc Psychol Bull 30:384–396, 2004), it was expected that an unexpected risk assessment (whether good or
bad) would result in high levels of intrusive thoughts. Other potential moderators of worry included neuroticism, level of
threat experienced (low control, high perceived risk), the use of differing coping efforts, and the available social support.
Of note was that while levels of intrusive thoughts fell in all risk groups following risk provision, unexpectedly only women
found to be at population risk reported an increase of active attempts to distract from intrusive worries at this time. The
CARA model was not supported. However, intrusion scores were independently associated with higher levels of neuroticism, a
lack of confidant support, and a confrontive coping response. Active avoidance scores were uniquely associated with being
assigned as population risk, neuroticism, lack of confidant and affective support, and the use of avoidant coping. Together,
these variables accounted for 33% of the variance in intrusion scores and 31% of the variance in avoidance scores. The implications
of these findings is discussed.
[Show abstract][Hide abstract] ABSTRACT: One hundred and twenty-eight women undergoing assessment for genetic risk of breast/ovarian cancer completed questionnaires at entry into the assessment process and following risk provision. The key variable of interest was the level of intrusive worries at each time, and factors associated with the level of intrusive worries following risk provision. Based on the CARA model (Renner, Pers Soc Psychol Bull 30:384-396, 2004), it was expected that an unexpected risk assessment (whether good or bad) would result in high levels of intrusive thoughts. Other potential moderators of worry included neuroticism, level of threat experienced (low control, high perceived risk), the use of differing coping efforts, and the available social support. Of note was that while levels of intrusive thoughts fell in all risk groups following risk provision, unexpectedly only women found to be at population risk reported an increase of active attempts to distract from intrusive worries at this time. The CARA model was not supported. However, intrusion scores were independently associated with higher levels of neuroticism, a lack of confidant support, and a confrontive coping response. Active avoidance scores were uniquely associated with being assigned as population risk, neuroticism, lack of confidant and affective support, and the use of avoidant coping. Together, these variables accounted for 33% of the variance in intrusion scores and 31% of the variance in avoidance scores. The implications of these findings is discussed.
[Show abstract][Hide abstract] ABSTRACT: The study has three aims; firstly to establish if, having been informed of their risk status and that gene testing is inappropriate for them, low and moderate risk patients have misunderstood or failed to grasp this and want a test that is inappropriate for them. Secondly, to elicit patients' willingness to pay for cancer genetic services. Thirdly, to ascertain the aspects of cancer genetics services that are important to high risk patients and present service configurations prioritised in terms of preferences accompanied by their costs (cost-consequences analysis). Patient preferences were gathered from 120 patients returning a self-administered discrete choice questionnaire issued post genetic risk assessment. Patients at low and moderate risk of developing breast cancer desired inappropriate testing. Patients at high, moderate and low risk of developing genetic cancer were willing to pay up to 3,000 pounds for genetic serviced, which exceeds the current estimated cost of providing testing and counselling. Counselling by a genetics associate accompanied by favourable levels of other attributes provided high utility and substantial cost savings.
[Show abstract][Hide abstract] ABSTRACT: This study identified levels of distress, and predictors of levels of distress, in women undergoing assessment for genetic risk of breast/ovarian cancer based on their family history. It comprised a cohort study following 154 women who completed questionnaires at entry into a cancer genetic assessment programme and following risk provision. Independent significant associates of anxiety following risk provision were age, neuroticism, feeling hopeless about developing cancer, a perceived lack of control over developing cancer, lack of a social confidant, and a coping response involving acceptance/resignation. Depression was associated with age, neuroticism, feeling hopeless about developing cancer, lack of social confidant, and a coping response involving acceptance/resignation. To avoid high levels of psychological morbidity in future cohorts undergoing cancer genetic risk assessment, information should be given that emphasises that some degree of control over health outcomes through behaviour change or increased surveillance is possible.
No preview · Article · Jul 2008 · Journal of Genetic Counseling
[Show abstract][Hide abstract] ABSTRACT: Patients concerned about a family history of breast cancer can face difficult decisions about screening, prophylactic surgery and genetic testing. Decision aids can facilitate patient decision making and currently include leaflets and computerized tools. These are largely aimed at the North American market. However, no decision aids concerning familial breast cancer exist in the UK.
Focus groups were held with 39 women over 18 years of age referred to a cancer genetics clinic, and who had been given a risk assessment for developing breast cancer. Each focus group examined three existing North American decision aids (1 paper-based and 2 CD-ROMs) and explored what a decision aid in a UK context should look like and the information it should contain.
There was enthusiasm for the development of decision aids that suit the local context in terms of its health care policy, in paper-based and CD-ROM formats. This paper identifies areas of agreement and disagreement in terms of both content and presentation styles, and also reports some of the suggestions received about where, when and with whom decision aids should be used. Participants suggested that decision aids would be most effective when they allowed a user-selected range of formats.
There is still significant unmet demand for information and decision support in the context of publicly funded health care. The patient perspective provides a unique insight into issues of design, style and communication.
Full-text · Article · Mar 2008 · Journal of Evaluation in Clinical Practice
[Show abstract][Hide abstract] ABSTRACT: This multi-centre study examined factors associated with breast cancer-specific distress in 2321 women under 50 who are on a mammographic screening programme on account of their family history. Women were recruited from 21 UK centres, and completed a questionnaire one month before their screening appointment. The transactional theory of stress, appraisal, and coping provided the theoretical framework for the study. Factors measured included screening history, family history, perceived risk, cognitive appraisals, coping, optimism, and cancer worry. The findings indicate that the majority of women appraise their family history as being relevant and somewhat threatening to personal well-being, but something they can deal with emotionally. Acceptance was the most commonly used coping strategy. Hierarchical regression analysis identified that the factors most significantly associated with distress were an appraisal of high relevance and threat, increased risk perception, low dispositional optimism, and the use of both avoidant and task-orientated coping strategies. Women with children and those with relatives who have died from breast cancer were also more distressed. To conclude, most women appraised their situation positively but there is a potential profile of risk factors which may help clinicians identify those women who need extra psychological support as they progress through screening.
[Show abstract][Hide abstract] ABSTRACT: One hundred and fifty-four women undergoing breast/ovarian cancer genetic risk assessment completed questionnaires at entry into the Cancer Genetic Service for Wales (CGSW) assessment program and following risk provision, mapping the strength of intentions to engage in a number of preventive/surveillance behaviors, including seeing specialists, breast self-examination, and involvement in screening programs, including mammography. A number of potential predictors of intentions were also assessed, including participants' mood and emotional response to receiving risk information, the perceived benefits (in terms of reassurance and early disease detection) of engaging in each preventive behavior, and the perceived desires of their family and General Practitioner. Intentions to self-examine did not change following risk provision, although strength of intentions to engage in some other preventive behaviors did lessen. Family and General Practitioners appeared to be strong social influences on behavioral intentions, as were the perceived benefits of gaining reassurance and/or early detection of disease.
No preview · Article · Nov 2007 · Journal of Genetic Counseling
[Show abstract][Hide abstract] ABSTRACT: The aim of this study was to evaluate the effectiveness of a distraction-based coping leaflet in reducing distress in women undergoing genetic risk assessment for breast/ovarian cancer.
One hundred sixty-two women participated in a randomized controlled trial, receiving either the intervention or standard information. Data were collected through a postal questionnaire at entry into a genetic risk assessment programme and 1 month later.
Analysis of covariance revealed a nonsignificant reduction in distress in all women, and a significant reduction of distress among those with high baseline stress, who received the intervention. No gains were found among the control group. Measures of emotional response while thinking about cancer genetic assessment suggested these benefits were achieved in the absence of any rebound emotional response.
The intervention offers a low-cost effective coping intervention, which could be integrated into existing services with minimal disruption and may also be appropriate for other periods of waiting and uncertainty.
No preview · Article · Aug 2007 · Journal of Psychosomatic Research
[Show abstract][Hide abstract] ABSTRACT: The information needs of men with breast cancer are under-researched. This article uses questionnaire data from 161 men with breast cancer, and in-depth interview data from a sample of 30 of these men, to explore perceptions of information needs and how best to meet these needs. These men typically received verbal information or written information in the form of leaflets or booklets. Generally this information was helpful, was pitched at about the right level and contained the right amount of information, but was of variable relevance given that it had not been developed specifically for men. Men with breast cancer would benefit from receiving gender-specific information, given the limitations of existing information sources. Of all healthcare professionals, breast care nurses were described as being most helpful in terms of providing both information and practical support.
No preview · Article · May 2007 · British journal of nursing (Mark Allen Publishing)
[Show abstract][Hide abstract] ABSTRACT: Cancer genetics is one of the fastest-growing areas of clinical genetics and it is imperative to identify how services should be organized and delivered in the future.
A qualitative study utilizing focus group methodology which explored the attitudes of clinicians working in the Medical Genetics Service for Wales to a number of possible models for future service delivery.
There was no consensus for any particular model. Greater involvement of primary care practitioners is anticipated, but this requires investment in information, education and professional development initiatives. Self-referrals were not encouraged, though the promotion of genetic literacy amongst the general population was supported, particularly in conjunction with pharmacists.
As demand for cancer genetics services continues to increase, some consensus about the future delivery of such services is necessary. Consultation with other stakeholder groups, especially primary care practitioners and patients, should also contribute to service planning.
Full-text · Article · Mar 2007 · Journal of Evaluation in Clinical Practice
[Show abstract][Hide abstract] ABSTRACT: The recognition of an inherited component to breast cancer has led to an increase in demand for information, reassurance, and genetic testing, resulting in the creation of genetics clinics for familial cancer. The first step for patients referred to a cancer genetic clinic is a risk assessment.
To evaluate the impact of cancer genetic risk assessment services on patients at risk of familial breast cancer.
The specialised register maintained by the Cochrane Breast Cancer Group was searched. We also searched MEDLINE, EMBASE, CINAHL, PsycLIT, CENTRAL, DARE, ASSIA, Web of Science, SIGLE and LILACS. The searches covered the period 1985 to February 2005. We also hand-searched relevant journals.
Trials looking at interventions for cancer genetic risk assessment delivery for familial breast cancer were considered for inclusion. Trials assessed outcomes such as understanding of risk, satisfaction and psychological well-being. Studies were excluded if they concerned cancers other than breast cancer or if participants were not at risk of breast cancer. Trials concerning the provision of information or education were also excluded as it was intended to review these separately. Participants could be individuals of any age or gender, with or without a known BRCA mutation, but without a previous history of breast cancer or any other serious illness.
Two authors independently assessed trial quality and extracted data. Additional information was sought from investigators as necessary. Due to the heterogeneity of both the interventions and outcomes, data were analysed descriptively.
Fifty-eight papers were identified as relevant to the review, 54 of these were subsequently excluded. The three included trials (pertaining to five papers), provide data on 1251 participants and assessed the impact of cancer genetic risk assessment on outcomes including perceived risk, and psychological distress. This review suggests that cancer genetic risk assessment services help to reduce distress, improve the accuracy of the perceived risk of, and increase knowledge about, breast cancer and genetics. The health professional delivering the risk assessment does not appear to have a significant impact on these outcomes.
This review found favourable outcomes for patients' risk assessment for familial breast cancer. However, there were too few papers to make any significant conclusions about how best to deliver cancer genetic risk assessment services. Further research is needed assessing the best means of delivering cancer risk assessment, by different health professionals, in different ways and in alternative locations.
Full-text · Article · Feb 2007 · Cochrane database of systematic reviews (Online)
[Show abstract][Hide abstract] ABSTRACT: There is increasing need for accessible information about familial breast cancer for those facing complex decisions around genetic testing, screening and treatment. Information currently includes leaflets and computerized decision aids, offering interactive interfaces to clarify complex choices.
Exploration of users' views and reactions to three decision aids for genetic testing for breast cancer using focus groups.
A regional cancer genetics service in the UK.
Women over 18 years of age who had been referred to Cancer Genetics Service for Wales (CGSW) and had received a risk assessment for familial breast cancer.
Qualitative study involving one pilot and six extended focus groups with 39 women at high, moderate and population risk. Two CD-ROMs and one paper-based aid evaluated for: clarity of presentation, ease of handling, emotive response, increased knowledge and greater informed choice.
Women reported variable preferences for different types of decision aids and mixed emotions, indicating the sensitivity of raising issues in decision support tools, lack of consensus over the most appropriate aid and no systematic differences between risk groups. Women remarked that aids increased their knowledge, particularly about breast cancer genes and risk and wanted a decision aid designed within the context of the NHS, in both paper-based and CD-ROM formats from an authoritative source. Mixed views about presentation styles suggest decision aids would be most effective with a user-selected range of formats.
Decision aid development should be informed by users and should meet the needs of those concerned about their risk of breast cancer in the UK. Without such aids, patients will continue to search for information from a variety of sources of varying quality.
Full-text · Article · Oct 2006 · Health Expectations
[Show abstract][Hide abstract] ABSTRACT: To investigate the experiences of men with breast cancer across the United Kingdom, a multi-phase study using: (a) focus groups (n = 4) with men and women with breast cancer and with healthcare professionals; (b) questionnaires to men with breast cancer (n = 161); (c) follow-up interviews with these men (n = 30) and (d) reconvening the focus groups (n = 2) for the men and women with breast cancer. The majority of men (84%, n = 135) reported their symptoms early, but were shocked to receive a breast cancer diagnosis. Disclosure of the diagnosis was commonly made to partners (80%, n = 129) and other close family and was influenced by perceptions of embarrassment, stigma and altered body image. Very little information was available to participants; that which was available was often inappropriate as it was intended for women. Over half the sample wanted much more information (56%, n = 90). This study also demonstrated low utilisation of formal support services and initiatives are needed to improve the information and support provided to men with breast cancer after diagnosis and treatment. Increasing the profile of breast cancer in men generally amongst healthcare professionals and the public is also needed.
No preview · Article · Mar 2006 · European Journal of Cancer
[Show abstract][Hide abstract] ABSTRACT: This study explored the emotional and coping responses of women referred for cancer genetic risk assessment and the acceptability of a written distraction-based coping intervention. Fifteen women recently referred into the Cancer Genetics Service for Wales (CGSW) took part in a focus group study. The women were divided into two groups, each of which met twice. During the first session, each group discussed their psychological responses to the referral and how they coped with their worries. Women discussed the potential role of the intervention in minimising distress. Analysis of the transcripts revealed that most women welcomed the referral to CGSW and that it did not create distress. However, there was concern for family members and anxiety about subsequent stages of the assessment process. The intervention was considered appropriate and potentially effective.
[Show abstract][Hide abstract] ABSTRACT: This article reports the first United Kingdom study to examine the prevalence of psychological distress in men with breast cancer and the factors associated with increased distress.
One hundred and sixty-one men with breast cancer completed a cross-sectional questionnaire that included measures of anxiety and depressive symptoms, cancer-specific distress, body image, coping, information and support needs, and clinical and demographic variables.
Clinical levels of anxiety and depressive symptoms were reported by 6% and 1% of men, respectively, while 23% reported high levels of cancer-specific distress. Anxiety was most strongly associated with avoidance coping and fear and uncertainty about the future (42% of the variance in anxiety scores, P < .001). Depressive symptoms were associated with altered body image (35% of the variance, P < .001). Body image, avoidance coping, referral to the study by a clinician, fear and uncertainty, and wanting to receive more gender-specific information together explained 51% of the variance in cancer-related distress (P < .001). Clinical and demographic factors did not account for a significant proportion of the variance in any of the distress measures.
Although the prevalence of clinical anxiety and depressive symptoms were low in this sample, almost a quarter of men experienced traumatic stress symptoms specific to breast cancer. Potential risk factors for distress include the use of avoidant coping strategies, negative body image, feelings of fear and uncertainty in relation to breast cancer, and unmet information needs. Suggestions are made for improving the information and support available to men with breast cancer.
Full-text · Article · Jan 2006 · Journal of Clinical Oncology
[Show abstract][Hide abstract] ABSTRACT: Pedigree construction and disease confirmation are the means by which reported family histories are translated into a verified clinical tool informing risk assessment and management decisions by clinical genetics staff. In this study, we hypothesised that pedigree generation data processes do not generally require the clinical expertise of genetic counsellors and that they could be successfully transferred to nonclinical data administrators. We made a pragmatic comparison of two processes of pedigree generation by different personnel from 14 consecutive family history questionnaires containing 88 living and decease affected individuals. The pedigrees generated by the genetic counsellor and the data administrator were compared; discrepancies were quantified and their source determined. The information gathered by the data administrator mirrored that of the genetic counsellors in 89% of cases. Time was saved by permitting direct access to cancer registry and local oncology centre databases. Constructing a pedigree is not always a case of transferring clear-cut data. Decisions need to be made about which cancers to confirm. Notable differences emerged in the number of pieces of information not transferred. Ambiguous information was often interpreted differently, suggesting the need for clinical staff to review pedigrees after their initial plotting by the data administrator. This study demonstrates a good degree of concordance between pedigrees constructed by a nonclinical data administrator and those of experienced genetic counsellors. However, the redirection of all pedigree activity to nonclinical personnel up to the point of risk review is not possible at present.
Full-text · Article · Oct 2005 · European Journal of HumanGenetics
[Show abstract][Hide abstract] ABSTRACT: This exploratory study examines the role of rurality in referrals from primary care to the Cancer Genetics Service for Wales (CGSW) through a case study of referrals from Montgomeryshire, a predominantly rural area in mid-Wales located adjacent to the English border. Awareness of CGSW amongst practitioners is low. We found that rurality plays a role in referral behaviour as distance, time travelling and accessibility by car and public transport are all perceived to have an impact on the patient's decision to attend a clinic appointment. Some patients are being referred outside Wales as ease of access to services is considered more important than distance.
[Show abstract][Hide abstract] ABSTRACT: To enable primary care medical practitioners to generate a range of possible service delivery models for genetic counselling services and critically assess their suitability.
Modified nominal group technique using in primary care professional development workshops.
37 general practitioners in Wales, United Kingdom too part in the nominal group process. The practitioners who attended did not believe current systems were sufficient to meet anticipated demand for genetic services. A wide range of different service models was proposed, although no single option emerged as a clear preference. No argument was put forward for genetic assessment and counselling being central to family practice, neither was there a voice for the view that the family doctor should become skilled at advising patients about predictive genetic testing and be able to counsel patients about the wider implications of genetic testing for patients and their family members, even for areas such as common cancers. Nevertheless, all the preferred models put a high priority on providing the service in the community, and often co-located in primary care, by clinicians who had developed expertise.
There is a need for a wider debate about how healthcare systems address individual concerns about genetic concerns and risk, especially given the increasing commercial marketing of genetic tests.
Full-text · Article · May 2005 · BMC Family Practice
[Show abstract][Hide abstract] ABSTRACT: As a sequel to an earlier paper (Sarangi et al., 2004. J Genet Couns, 13(2), 135-155) examining genetic counselors' initiation of reflective frames, in this paper we analyze the variable ways in which clients respond to such reflective frames in the clinical setting. Of the six types of reflective questions identified, we focus on two types, which recur throughout the counseling protocol: (i) questions about clients' decisions to have genetic testing and (ii) questions exploring the potential impact of a positive or negative test result. The analytic focus here is on the mismatches surrounding clients' apparent readiness to discuss coping with the onset of disease (risk of disease) when they have been asked to discuss coping with genetic test results (risk of knowing). Our theoretical discussion is centered around the notion of alignment as a framework for locating the convergence and divergence of counselors' and clients' agendas in interaction. Drawing on detailed transcripts of 24 Huntington's Disease counseling consultations in South Wales, we analyze 119 counselor-client question-response sequences using the methodology of discourse analysis. Preliminary coding of clients' responses led us to identify three recurrent themes: (a) gaining knowledge as a basis for future action; (b) needing to know as a subjective necessity; and (c) downplaying what can be known. In a further analysis of extended data extracts, we draw attention to how clients display varying degrees of engagement with regard to the testing process and outcomes along the temporal and social axes. At one extreme, clients may take up the opportunity to engage in self-reflection, and thus endorse the legitimacy of the reflective frame. At the other extreme, clients may implicitly or explicitly challenge the relevance of self-reflection, and hence the usefulness of this counselor-initiated routine. We suggest that clients' varied response behaviors result from the perceived need of some clients to display their 'readiness' for predictive testing-an overarching 'meta-question' posed by the very existence of the counseling protocol.
No preview · Article · Mar 2005 · Journal of Genetic Counseling
[Show abstract][Hide abstract] ABSTRACT: To analyse spatial and temporal patterns in patients referred to a cancer genetics service in order to monitor service utilization and accessibility.
Postcodes of patients during a 4-year period were used to examine spatial patterns using a Geographical Information System (GIS). Referral rates were compared visually and statistically to explore yearly variation for administrative areas in Wales.
There has been a four-fold increase in actual referrals to the service over the period of study. The variance between unitary authority referral rates has decreased from the inception of the service from an almost ten-fold difference between lowest and highest in year 1 to less than a three-fold difference in year 4.
This study shows the potential of GIS to highlight spatial variations in referral rates across Wales. Although the disparity in referral rates has decreased, trends in referral rates are not consistent. Ongoing research will examine those referral and referrer characteristics affecting uptake.
Full-text · Article · Feb 2005 · Community Genetics