Browsing by Subject "Genetic Counseling"
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Item Implementation-effectiveness trial of systematic family health history based risk assessment and impact on clinical disease prevention and surveillance activities(BioMed Central Ltd., 2022-12-07) Wu, R. Ryanne; Myers, Rachel A.; Neuner, Joan; McCarty, Catherine; Haller, Irina V.; Harry, Melissa; Fulda, Kimberly G.; Dimmock, David; Rakhra-Burris, Tejinder; Buchanan, Adam; Ginsburg, Geoffrey S.; Orlando, Lori A.BACKGROUND: Systematically assessing disease risk can improve population health by identifying those eligible for enhanced prevention/screening strategies. This study aims to determine the clinical impact of a systematic risk assessment in diverse primary care populations. METHODS: Hybrid implementation-effectiveness trial of a family health history-based health risk assessment (HRA) tied to risk-based guideline recommendations enrolling from 2014-2017 with 12 months of post-intervention survey data and 24 months of electronic medical record (EMR) data capture. SETTING: 19 primary care clinics at four geographically and culturally diverse U.S. healthcare systems. PARTICIPANTS: any English or Spanish-speaking adult with an upcoming appointment at an enrolling clinic. METHODS: A personal and family health history based HRA with integrated guideline-based clinical decision support (CDS) was completed by each participant prior to their appointment. Risk reports were provided to patients and providers to discuss at their clinical encounter. OUTCOMES: provider and patient discussion and provider uptake (i.e. ordering) and patient uptake (i.e. recommendation completion) of CDS recommendations. MEASURES: patient and provider surveys and EMR data. RESULTS: One thousand eight hundred twenty nine participants (mean age 56.2 [SD13.9], 69.6% female) completed the HRA and had EMR data available for analysis. 762 (41.6%) received a recommendation (29.7% for genetic counseling (GC); 15.2% for enhanced breast/colon cancer screening). Those with recommendations frequently discussed disease risk with their provider (8.7%-38.2% varied by recommendation, p-valuesItem Randomized trial promoting cancer genetic risk assessment when genetic counseling cost removed: 1-year follow-up(Oxford University Press, 2024-03-16) An, Jinghua; McDougall, Jean; Lin, Yong; Lu, Shou-En; Walters, Scott T.; Heidt, Emily; Stroup, Antoinette; Paddock, Lisa; Grumet, Sherry; Toppmeyer, Deborah; Kinney, Anita Y.PURPOSE: Cancer genetic risk assessment (CGRA) is recommended for women with ovarian and high-risk breast cancer. However, the underutilization of CGRA has long been documented, and cost has been a major barrier. In this randomized controlled trial, a tailored counseling and navigation (TCN) intervention significantly improved CGRA uptake at 6-month follow-up, compared with targeted print (TP) and usual care (UC). We aimed to examine the effect of removing genetic counseling costs on CGRA uptake by 12 months. METHODS: We recruited racially and geographically diverse women with breast and ovarian cancer from cancer registries in Colorado, New Jersey, and New Mexico. Participants assigned to TCN received telephone-based psychoeducation and navigation. After 6 months, the trial provided free genetic counseling to participants in all arms. RESULTS: At 12 months, more women in TCN obtained CGRA (26.6%) than those in TP (11.0%; odds ratio [OR] = 2.77, 95% confidence interval [CI] = 1.56 to 4.89) and UC (12.2%; OR = 2.46, 95% CI = 1.41 to 4.29). There were no significant differences in CGRA uptake between TP and UC. The Kaplan-Meier curve shows that the divergence of cumulative incidence slopes (TCN vs UC, TCN vs TP) appears primarily within the initial 6 months. CONCLUSION: TCN significantly increased CGRA uptake at the 12-month follow-up. Directly removing the costs of genetic counseling attenuated the effects of TCN, highlighting the critical enabling role played by cost coverage. Future policies and interventions should address multilevel cost-related barriers to expand patients' access to CGRA. TRIAL REGISTRATION: This trial was registered with the NIH clinical trial registry, clinicaltrials.gov, NCT03326713. https://clinicaltrials.gov/ct2/show/NCT03326713.Item Sickle Cell Disease Awareness, Willingness to be Tested and Willingness to Participate in Genetic Counseling Among African Immigrants of the Democratic Republic of Congo in North Texas(2020-05) Njesada, Ndolembai S.; Nandy, Karabi; Sterling, David; Raines-Milenkov, Amy; Young, RichardThe aim of this exploratory cross-sectional research was to assess the awareness of Sickle Cell Disease (SCD), the willingness to be screened for SCD, and the willingness to participate in genetic counseling among African immigrants from the Democratic Republic of Congo who resided in North Texas through in-person surveys. A structure questionnaire containing 36 SCD questions was administered to DRC immigrants residing in Dallas-Fort-Worth-Denton-Arlington metroplex of North Texas between August and November 2019. One hundred and eighty-six were successfully interviewed. SCD awareness was very high among participants (97%); however, only about 65% agreed to participate in SCD testing and 72% to genetic counseling. Statistical significance in the levels of awareness, willingness to be screened and to participate in genetic counseling was noted between males and females. Education was negatively associated with awareness of SCD. Those who had less than high school education had higher odds of being aware of sickle cell compared to those who had more than high school education. However, those who had refugee immigration status had seven times higher odds of being willing to participate in SCD testing compared to permanent resident status. There is a need for SCD education among immigrants from endemic countries like DRC, given that almost half of the participants were not willing to participate in SCD educational programs. The need of mix methods studies to understand the various patterns of association related to all the factors associated with sickle cell disease is warranted.