scholarly journals Disclosing genetic risk for coronary heart disease: effects on perceived personal control and genetic counseling satisfaction

2015 ◽  
Vol 89 (2) ◽  
pp. 251-257 ◽  
Author(s):  
C.L. Robinson ◽  
H. Jouni ◽  
T.M. Kruisselbrink ◽  
E.E. Austin ◽  
K.D. Christensen ◽  
...  
Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Christopher L Robinson ◽  
Hayan Jouni ◽  
Teresa M Kruisselbrink ◽  
Kurt D Christensen ◽  
Robert C Green ◽  
...  

Background: Perceived personal control (PPC) represents the belief that a person can alter his/her own situation or state. Higher PPC has been associated with increased health-related quality of life and helps facilitate healthy behavioral changes. We investigated whether disclosure of coronary heart disease (CHD) genetic risk influences PPC and genetic counseling satisfaction (GCS) in the myocardial infarction genes (MI-GENES) study, a randomized controlled trial of disclosing genetic risk of CHD. Methods: Participants (40-65 year-old, at intermediate 10-year CHD risk, and not on statins) were randomized to receive estimated 10-year risk of CHD based on their Framingham Risk Score (FRS) or FRS plus a 28 SNP genetic risk score (FRS*GRS). CHD risk was disclosed in each arm by a genetic counselor during a 30-minute scripted session that included a discussion of the impact of family history on CHD risk. For FRS*GRS participants, the genetic counselor also reviewed how their genetic risk score altered their FRS. Each participant then met with a physician to engage in shared-decision making regarding the need for statin therapy. Afterwards, study participants were asked to complete validated surveys to assess PPC and GCS. The 9-item PPC questionnaire was scored 0-9, with higher scores indicating greater control beliefs. The 5-item GCS questionnaire was scored 0-10, with greater scores indicating greater satisfaction with the disclosure session. Results: 207 patients (mean age 58.8±5 years, 46.7% males) were randomized to receive either FRS or FRS*GRS. Patients randomized to receive FRS*GRS had higher PPC compared to FRS although the absolute difference was small (8.85±0.77 vs. 8.54±1.31, P=0.016). Patients randomized to receive FRS*GRS also had a higher GCS score than FRS patients (9.08±2.67 vs. 8.3±3.67, P=0.050]. Conclusions: Disclosure of genetic risk for CHD did not adversely affect PPC or GCS. In fact, patients who received CHD genetic risk information had higher PPC and GCS. Our findings suggest that disclosure of CHD genetic risk is appreciated by patients and may empower them to improve health-related behaviors.


2014 ◽  
Vol 23 (3) ◽  
pp. 381-387 ◽  
Author(s):  
Jorie Versmissen ◽  
Daniëlla M Oosterveer ◽  
Mojgan Yazdanpanah ◽  
Abbas Dehghan ◽  
Hilma Hólm ◽  
...  

Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
Sherry-Ann Brown ◽  
Hayan Jouni ◽  
Erin Austin ◽  
Tariq Marroush ◽  
Iftikhar Kullo ◽  
...  

Background: Whether disclosing genetic risk for coronary heart disease (CHD) to individuals influences information seeking and information sharing is not known. Methods: The myocardial infarction genes (MI-GENES) trial randomized participants aged 45-65 years who were at intermediate risk for CHD based on conventional risk factors and not on statins, to receive their conventional risk score (CRS) or their CRS plus a genetic risk score (GRS) based on 28 susceptibility variants. CHD risk was disclosed by a genetic counselor and then discussed with a physician. Surveys to assess information seeking (including internet use and accessing electronic health records (EHR)) were completed before and three and six months after risk disclosure. Information sharing parameters were assessed after risk disclosure. We assessed whether these behaviors differed by GRS disclosure, or by high (≥1.1) or low (<1.1) GRS. Adjustments were made for age, sex, family history of CHD, baseline CRS and GRS, and education. Results were reported as the mean difference (and standard error) in the score for each survey response between the GRS and CRS participants, with significance determined by regression analysis. Results: GRS participants accessed their EHR to obtain information related to their CHD risk more than CRS participants (0.14 ± 0.06, p=0.03). Overall internet use (0.61 ± 0.23, p=0.01), as well as internet use to seek information about heart disease (0.14 ± 0.06, p=0.02) and how genetic factors affect risk of having a heart attack (0.23 ± 0.07, p=0.002), was significantly higher in the GRS participants. GRS participants shared information about heart attack risk with others (0.35 ± 0.13, p=0.007), particularly family members (0.1 ± 0.04, p=0.02), (V4: 0.10 ± 0.05, p=0.05), and their primary care provider (V4: 0.15 ± 0.07, p=0.03) more than CRS participants. Internet use, EHR access, and information sharing did not differ significantly between the high and low GRS groups. Conclusions: Disclosure of GRS for CHD resulted in greater information seeking (including internet use and EHR access) and information sharing by study participants. Disclosure of genetic risk for CHD may help advance patient engagement in precision medicine.


2019 ◽  
Vol 84 ◽  
pp. 237.e5-237.e12
Author(s):  
Jeremy A. Elman ◽  
Matthew S. Panizzon ◽  
Mark W. Logue ◽  
Nathan A. Gillespie ◽  
Michael C. Neale ◽  
...  

2017 ◽  
Vol 52 (4) ◽  
pp. 499-506 ◽  
Author(s):  
Sherry-Ann Brown ◽  
Hayan Jouni ◽  
Tariq S. Marroush ◽  
Iftikhar J. Kullo

2012 ◽  
Vol 5 (2) ◽  
pp. 202-209 ◽  
Author(s):  
Anika A.M. Vaarhorst ◽  
Yingchang Lu ◽  
Bastiaan T. Heijmans ◽  
Martijn E.T. Dollé ◽  
Stefan Böhringer ◽  
...  

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