A community based study on intentions regarding predictive testing for hereditary breast cancer

Welkenhuysen, Myriam

doi:10.1136/jmg.38.8.540

Cited by 20 publications

(16 citation statements)

References 38 publications

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“…Despite the controversies and the uncertainties involved in the management of female carriers of a breast cancer mutation, the majority of the GPs judged performing a predictive test for breast cancer as being (very) acceptable. This is in line with the positive attitude towards predictive testing for breast cancer found in previous studies among GPs and other health care professionals [16, 25, 26]as well as among women from breast cancer families and from the general population (see Welkenhuysen et al [27]for an overview).…”

Section: Discussionsupporting

confidence: 73%

General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

Welkenhuysen¹,

Evers‐Kiebooms²

2002

Public Health Genomics

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Objective: Investigate the attitudes of general practitioners (GPs) concerning predictive testing for late-onset diseases, as well as the perception of their own role in this context. Methods: 356 GPs received mail questionnaires with telephone pre-notifications and reminders. Results: The questionnaire was returned by 60% (n = 215). The GPs’ attitudes toward predictive testing for breast cancer, thyroid cancer, Alzheimer disease and Huntington’s disease were influenced by the availability and the type of preventive and therapeutic options, the age of onset of the disease as well as by ethical concerns. Regarding a possible task for GPs, most of the GPs focussed on gate-keeping aspects, such as providing information and making referrals. Conclusion: The GPs were supportive of a limited role for general practice in predictive testing. Genetic education for GPs is needed, with attention to non-directiveness and the characteristic psychosocial and ethical implications of this particular type of genetic testing.

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Section: Discussionsupporting

confidence: 73%

General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

Welkenhuysen¹,

Evers‐Kiebooms²

2002

Public Health Genomics

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“…The Health Belief Model 22 postulates that the higher the perceived susceptibility to and the perceived severity of the condition, and the higher the perceived effectiveness in taking actions, the more the person will engage in health behaviors. 21,23 Our findings show that the majority of individuals who chose to be tested had a high perceived risk of having the familial mutation before being tested and considered glaucoma to be a serious medical condition. Some previous studies on inherited cancers have shown that individuals are more likely to be tested if their perceived risk, not their actual risk, of cancer is high.…”

Section: Discussionmentioning

confidence: 77%

“…[17][18][19][20] Inherited cancers differ from glaucoma in that they are life-threatening and require invasive interventions. 17,21 However, both inherited cancers Original research article and glaucoma can be of juvenile or adult onset, have treatment options, and have an incomplete but strong penetrance; moreover, associated genetic testing has proven to have clinical validity for both conditions. We therefore used the literature on inherited cancers to draw parallels with our results.…”

Section: Discussionmentioning

confidence: 99%

“…17,18,24 A previous study on inherited cancers found that the perceived benefits component was the most powerful variable in explaining interest in predictive testing. 21 Another study identified two clusters of motives: one included perceived health benefits (early detection, prevention, and control), and the other included perceived emotional benefits (reassurance, reduction of uncertainty, and emotional preparation). 23 Similarly, in our study, taking appropriate medical interventions and the reduction of uncertainty were the two most-often-selected motivations for undertaking genetic testing, and the main reported benefit was monitoring for early detection.…”

Section: Discussionmentioning

confidence: 99%

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Predictive genetic testing experience for myocilin primary open-angle glaucoma using the Australian and New Zealand Registry of Advanced Glaucoma

Souzeau

Glading

Keane

et al. 2014

Genetics in Medicine

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Purpose: Predictive genetic testing of relatives of known myocilin (MYOC) gene mutation carriers is an appropriate strategy to identify individuals at risk for glaucoma. It is likely to prevent irreversible blindness in this high-risk group because this treatable condition might otherwise be diagnosed late. The Australian and New Zealand Registry of Advanced Glaucoma has established genetic testing protocols for known glaucoma genes, including MYOC. Methods:Through the Australian and New Zealand Registry of Advanced Glaucoma, we investigated the experience of 40 unaffected individuals who had undergone predictive genetic testing for MYOC mutations through questionnaires. Results:The main motivations for being tested were (i) to make appropriate interventions and (ii) to reduce uncertainty. All our respondents perceived strong benefits, either medical or emotional, in being tested. However, different concerns were raised by the respondents that need to be addressed during counseling. Greater family awareness was reported by the majority of the respondents, and the ability to provide information to children was a strong motivation for being tested. Conclusion:This study provides valuable information on the personal and familial impacts of having predictive genetic testing for glaucoma, which will help health professionals to better address the issues faced by patients and provide them adequate support.

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“…Positive attitudes toward predictive testing for HBC in adults were also found in previous studies among health care professionals [9, 10]as well as among women from breast cancer families and from the general population [for an overview, see ref. 11]. As for predictive testing for HD, earlier research revealed favourable attitudes among health care professionals [12]and among women from the general population [13].…”

Section: Discussionmentioning

confidence: 99%

Predictive Genetic Testing for Breast Cancer and Huntington’s Disease: The Opinions of Midwives and Nurses in Flanders

Welkenhuysen

Evers‐Kiebooms²

2003

Public Health Genomics

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Objective: Investigate attitudes of midwives and nurses regarding predictive testing for hereditary breast cancer and Huntington’s disease. Methods: Mail questionnaires were sent to 119 midwives and 881 nurses. Results: The response rate was 58% for midwives, but only 33% for nurses. The attitude toward predictive testing in an asymptomatic adult was more favourable in case of hereditary breast cancer than in case of Huntington’s disease, mostly because prevention or therapy is unavailable for the latter condition. Prevention of breast cancer through prophylactic mastectomy elicited adverse reactions among 40% of the participants. Predictive testing for these diseases in an adolescent at the own request was also rated favourably while testing in children at the parents’ request was less acceptable. For both diseases, concealing carrier status information from the employer or the insurance company was judged as acceptable by the majority. Conclusion: Our findings contribute to the understanding of nurses’ and especially midwives’ attitudes to predictive testing, which may in turn serve as a basis for genetic education for these groups of health care professionals.

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A community based study on intentions regarding predictive testing for hereditary breast cancer

Cited by 20 publications

References 38 publications

General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

Predictive genetic testing experience for myocilin primary open-angle glaucoma using the Australian and New Zealand Registry of Advanced Glaucoma

Predictive Genetic Testing for Breast Cancer and Huntington’s Disease: The Opinions of Midwives and Nurses in Flanders

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