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Patient perspective on the value of genetic counselling for familial pancreas cancer.

Axilbund JE, Brune KA, Canto MI, Brehon BC, Wroblewski LD, Griffin CA - Hered Cancer Clin Pract (2005)

Bottom Line: Questionnaires were mailed after the visit to assess perceived value of the counselling session.The average perceived lifetime risk of developing pancreas cancer was 51%, and 87% of respondents would ultimately seek predictive genetic testing.Despite the lack of an identified major causative gene for pancreas cancer, respondents found genetic counselling for this malignancy to be helpful.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Oncology, School of Medicine, The Johns Hopkins University, Baltimore, Maryland, USA. axilbund@jhmi.edu.

ABSTRACT

Purpose: To assess patient views regarding the value of genetic counselling for familial pancreas cancer in the absence of predictive genetic testing.

Patients and methods: At-risk adults with three or more relatives with pancreas cancer received genetic counselling prior to research screening via endoscopic ultrasound. Questionnaires were mailed after the visit to assess perceived value of the counselling session.

Results: Ninety-three percent of respondents felt genetic counselling for pancreas cancer was helpful despite the lack of a causative gene, while only 7% felt that it should not be offered until such a gene is discovered. Over half of respondents believed the pancreas cancer in their family was caused by a gene mutation, and 42% thought they had inherited the mutation. The average perceived lifetime risk of developing pancreas cancer was 51%, and 87% of respondents would ultimately seek predictive genetic testing. When more information is gained, 89% would be interested in another genetic counselling session, and 82% would recommend current genetic counselling for pancreas cancer to a friend or relative with a family history of the disease.

Conclusion: Despite the lack of an identified major causative gene for pancreas cancer, respondents found genetic counselling for this malignancy to be helpful. These patients perceive their personal cancer risk to be high, and would seek predictive genetic testing if it were available. Referral for genetic counselling should be offered to appropriate individuals.

No MeSH data available.


Related in: MedlinePlus

Patient views on genetic counselling for familial pancreas cancer.
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Figure 1: Patient views on genetic counselling for familial pancreas cancer.

Mentions: Six questions ascertained participant views regarding genetic counselling for familial pancreas cancer. Overall responses were favourable, indicating that respondents found the session to be beneficial. Groups 1 and 2 were very similar, but group 1 respondents were more likely to prefer only the endoscopy procedure and not genetic counselling (p ≤ 0.025) and were less likely to find genetic counselling helpful in the absence of an identified "pancreas cancer gene" (p ≤ 0.05). There were no significant differences between males and females or varying educational levels. Combined responses are presented in Figure 1.


Patient perspective on the value of genetic counselling for familial pancreas cancer.

Axilbund JE, Brune KA, Canto MI, Brehon BC, Wroblewski LD, Griffin CA - Hered Cancer Clin Pract (2005)

Patient views on genetic counselling for familial pancreas cancer.
© Copyright Policy
Related In: Results  -  Collection

Show All Figures
getmorefigures.php?uid=PMC2837293&req=5

Figure 1: Patient views on genetic counselling for familial pancreas cancer.
Mentions: Six questions ascertained participant views regarding genetic counselling for familial pancreas cancer. Overall responses were favourable, indicating that respondents found the session to be beneficial. Groups 1 and 2 were very similar, but group 1 respondents were more likely to prefer only the endoscopy procedure and not genetic counselling (p ≤ 0.025) and were less likely to find genetic counselling helpful in the absence of an identified "pancreas cancer gene" (p ≤ 0.05). There were no significant differences between males and females or varying educational levels. Combined responses are presented in Figure 1.

Bottom Line: Questionnaires were mailed after the visit to assess perceived value of the counselling session.The average perceived lifetime risk of developing pancreas cancer was 51%, and 87% of respondents would ultimately seek predictive genetic testing.Despite the lack of an identified major causative gene for pancreas cancer, respondents found genetic counselling for this malignancy to be helpful.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Oncology, School of Medicine, The Johns Hopkins University, Baltimore, Maryland, USA. axilbund@jhmi.edu.

ABSTRACT

Purpose: To assess patient views regarding the value of genetic counselling for familial pancreas cancer in the absence of predictive genetic testing.

Patients and methods: At-risk adults with three or more relatives with pancreas cancer received genetic counselling prior to research screening via endoscopic ultrasound. Questionnaires were mailed after the visit to assess perceived value of the counselling session.

Results: Ninety-three percent of respondents felt genetic counselling for pancreas cancer was helpful despite the lack of a causative gene, while only 7% felt that it should not be offered until such a gene is discovered. Over half of respondents believed the pancreas cancer in their family was caused by a gene mutation, and 42% thought they had inherited the mutation. The average perceived lifetime risk of developing pancreas cancer was 51%, and 87% of respondents would ultimately seek predictive genetic testing. When more information is gained, 89% would be interested in another genetic counselling session, and 82% would recommend current genetic counselling for pancreas cancer to a friend or relative with a family history of the disease.

Conclusion: Despite the lack of an identified major causative gene for pancreas cancer, respondents found genetic counselling for this malignancy to be helpful. These patients perceive their personal cancer risk to be high, and would seek predictive genetic testing if it were available. Referral for genetic counselling should be offered to appropriate individuals.

No MeSH data available.


Related in: MedlinePlus