Patient and Clinician Decision Support to Increase Genetic Counseling for Hereditary Breast and Ovarian Cancer Syndrome in Primary Care

Kukafka, Rita; Pan, Samuel; Silverman, Thomas; Zhang, Tianmai; Chung, Wendy K.; Terry, Mary Beth; Fleck, Elaine; Younge, Richard; Trivedi, Meghna S.; McGuinness, Julia E.; He, Ting; Dimond, Jill; Crew, Katherine D.

doi:10.1001/jamanetworkopen.2022.22092

Cited by 18 publications

(42 citation statements)

References 86 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…We found 3 tools (out of 10), the Breast Cancer Risk Assessment Tool (BCRAT), Claus, and RealRisks that assessed the uptake of these tools in clinical practice settings. 62 , 64 , 122 – 130 Studies suggest that BCRAT and RealRisks tools have been directly embedded within electronic health record (EHR) systems in primary care clinics, academic medical centers, and outpatient clinics to prompt patient-provider discussions during a clinic visit. 64 , 122 , 123 , 127 , 129 , 130 A survey conducted by Park et al 125 to assess the utilization of breast cancer risk assessment tools found that 86% ( n = 215) of genetic counsellors with clinical practices in the United States had used the BCRAT tool to evaluate chemoprevention eligibility in women with a personal or family history of breast cancer.…”

Section: Resultsmentioning

confidence: 99%

“… 62 , 64 , 122 – 130 Studies suggest that BCRAT and RealRisks tools have been directly embedded within electronic health record (EHR) systems in primary care clinics, academic medical centers, and outpatient clinics to prompt patient-provider discussions during a clinic visit. 64 , 122 , 123 , 127 , 129 , 130 A survey conducted by Park et al 125 to assess the utilization of breast cancer risk assessment tools found that 86% ( n = 215) of genetic counsellors with clinical practices in the United States had used the BCRAT tool to evaluate chemoprevention eligibility in women with a personal or family history of breast cancer. 125 Other reasons for use included surveillance (51%), magnetic resonance imaging eligibility (38%), insurance coverage of genetic testing (9%), and genetic testing eligibility (7%).…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

A Scoping Review of Personalized, Interactive, Web-Based Clinical Decision Tools Available for Breast Cancer Prevention and Screening in the United States

Kamil,

Wojcik,

Smith

et al. 2024

MDM Policy & Practice

View full text Add to dashboard Cite

Introduction. Personalized web-based clinical decision tools for breast cancer prevention and screening could address knowledge gaps, enhance patient autonomy in shared decision-making, and promote equitable care. The purpose of this review was to present evidence on the availability, usability, feasibility, acceptability, quality, and uptake of breast cancer prevention and screening tools to support their integration into clinical care. Methods. We used the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews Checklist to conduct this review. We searched 6 databases to identify literature on the development, validation, usability, feasibility, acceptability testing, and uptake of the tools into practice settings. Quality assessment for each tool was conducted using the International Patient Decision Aid Standard instrument, with quality scores ranging from 0 to 63 (lowest-highest). Results. We identified 10 tools for breast cancer prevention and 9 tools for screening. The tools included individual (e.g., age), clinical (e.g., genomic risk factors), and health behavior (e.g., alcohol use) characteristics. Fourteen tools included race/ethnicity, but no tool incorporated contextual factors (e.g., insurance, access) associated with breast cancer. All tools were internally or externally validated. Six tools had undergone usability testing in samples including White (median, 71%; range, 9%–96%), insured (99%; 97%–100%) women, with college education or higher (60%; 27%–100%). All of the tools were developed and tested in academic settings. Seven (37%) tools showed potential evidence of uptake in clinical practice. The tools had an average quality assessment score of 21 (range, 9–39). Conclusions. There is limited evidence on testing and uptake of breast cancer prevention and screening tools in diverse clinical settings. The development, testing, and integration of tools in academic and nonacademic settings could potentially improve uptake and equitable access to these tools. Highlights There were 19 personalized, interactive, Web-based decision tools for breast cancer prevention and screening. Breast cancer outcomes were personalized based on individual clinical characteristics (e.g., age, medical history), genomic risk factors (e.g., BRCA1/2), race and ethnicity, and health behaviors (e.g., smoking). The tools did not include contextual factors (e.g., insurance status, access to screening facilities) that could potentially contribute to breast cancer outcomes. Validation, usability, acceptability, and feasibility testing were conducted mostly among White and/or insured patients with some college education (or higher) in academic settings. There was limited evidence on testing and uptake of the tools in nonacademic clinical settings.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

A Scoping Review of Personalized, Interactive, Web-Based Clinical Decision Tools Available for Breast Cancer Prevention and Screening in the United States

Kamil,

Wojcik,

Smith

et al. 2024

MDM Policy & Practice

View full text Add to dashboard Cite

show abstract

“…This has been demonstrated primarily in affected individuals through facilitated referral pathways at the time of cancer diagnoses, as well as in unaffected at-risk individuals in the primary care setting. [17][18][19] Community health worker involvement was crucial to the success of our program, and community health worker assistance was the most significant independent factor associated with completion of genetic testing. Having a bilingual community health worker who spoke the two most common languages at our institution may have reduced language discordance between patients and their health care professionals.…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A Community Health Worker Model to Support Hereditary Cancer Risk Assessment and Genetic Testing

Marsh

Mendoza

Tatsugawa

et al. 2023

Obstetrics &Amp; Gynecology

View full text Add to dashboard Cite

OBJECTIVE: To evaluate the effects of a community health worker–supported hereditary cancer risk-assessment and genetic testing program in a safety-net hospital serving more than 70% medically underserved patients. METHODS: This community health worker pilot program began in January 2020 at women’s health clinics by administering original National Comprehensive Cancer Network (NCCN)–based questionnaires. Patients meeting high-risk criteria were offered video-based genetic education and testing, notified of results using telehealth, and offered indicated counseling. We compared the rate of genetic counseling and testing in the first 18 months of the pilot program with that in the prior 18 months. RESULTS: In the first 18 months of the pilot program, 940 patients were screened through the community health worker program: 196 were identified as high-risk, 103 patients were tested, and pathogenic variants were identified in 10 (9.7%), two of whom had a personal cancer history. In addition, 73 patients were tested per usual practice by a certified genetic counselor: pathogenic variants were identified in 16 (21.9%), 11 (68.8%) of whom had a personal cancer history. In the 18 months before the program, 68 patients underwent genetic testing with a certified genetic counselor, pathogenic variants were identified in 16 (23.5%), 13 (81.3%) of whom had a personal cancer history. The community health worker program led to a significant increase in testing among unaffected patients based on family history alone (odds ratio [OR] 7.0; 95% CI 3.7–13.2; P<.001), paralleled by a respective significant increase in the identification of pathogenic variants (OR 4.33; 95% CI 1.0–18.9; P=.051). CONCLUSION: This pilot program demonstrates the feasibility of a community health worker–supported program, using self-administered questionnaires and telehealth-based genetic services in a primarily medically underserved population. This program improved the detection of unaffected high-risk patients based on family history, increasing the volume of tests performed for this indication. Programs of this type may improve family history–based hereditary cancer testing in medically underserved patients, further enabling cancer-prevention strategies.

show abstract

“…The experimental arms were noninferior to the control arm for distress in the primary cohort (family history) as well as in the secondary (familial PV) cohort, supporting the option of a less-intensive counseling approach in the provision of cancer genetic risk assessment. Most previous randomized clinical trials related to cancer risk assessment have involved adding tools or techniques for genetic counseling but have not specifically addressed the need for individualized counseling. Telephone counseling has been equivalent to in-person genetic counseling in several randomized clinical trials, and therefore telephone counseling was used for our control arms.…”

Section: Discussionmentioning

confidence: 99%

Remotely Delivered Cancer Genetic Testing in the Making Genetic Testing Accessible (MAGENTA) Trial

Swisher,

Rayes,

Bowen

et al. 2023

JAMA Oncol

View full text Add to dashboard Cite

ImportanceRequiring personalized genetic counseling may introduce barriers to cancer risk assessment, but it is unknown whether omitting counseling could increase distress.ObjectiveTo assess whether omitting pretest and/or posttest genetic counseling would increase distress during remote testing.Design, Setting, and ParticipantsMaking Genetic Testing Accessible (MAGENTA) was a 4-arm, randomized noninferiority trial testing the effects of individualized pretest and/or posttest genetic counseling on participant distress 3 and 12 months posttest. Participants were recruited via social and traditional media, and enrollment occurred between April 27, 2017, and September 29, 2020. Participants were women aged 30 years or older, English-speaking, US residents, and had access to the internet and a health care professional. Previous cancer genetic testing or counseling was exclusionary. In the family history cohort, participants had a personal or family history of breast or ovarian cancer. In the familial pathogenic variant (PV) cohort, participants reported 1 biological relative with a PV in an actionable cancer susceptibility gene. Data analysis was performed between December 13, 2020, and May 31, 2023.InterventionParticipants completed baseline questionnaires, watched an educational video, and were randomized to 1 of 4 arms: the control arm with pretest and/or posttest genetic counseling, or 1 of 3 study arms without pretest and posttest counseling. Genetic counseling was provided by phone appointments and testing was done using home-delivered saliva kits.Main Outcomes and MeasuresThe primary outcome was participant distress measured by the Impact of Event Scale 3 months after receiving the results. Secondary outcomes included completion of testing, anxiety, depression, and decisional regret.ResultsA total of 3839 women (median age, 44 years [range 22-91 years]), most of whom were non-Hispanic White and college educated, were randomized, 3125 in the family history and 714 in the familial PV cohorts. In the primary analysis in the family history cohort, all experimental arms were noninferior for distress at 3 months. There were no statistically significant differences in anxiety, depression, or decisional regret at 3 months. The highest completion rates were seen in the 2 arms without pretest counseling.Conclusions and RelevanceIn the MAGENTA clinical trial, omitting individualized pretest counseling for all participants and posttest counseling for those without PV during remote genetic testing was not inferior with regard to posttest distress, providing an alternative care model for genetic risk assessment.Trial RegistrationClinicalTrials.gov Identifier: NCT02993068

show abstract

Patient and Clinician Decision Support to Increase Genetic Counseling for Hereditary Breast and Ovarian Cancer Syndrome in Primary Care

Cited by 18 publications

References 86 publications

A Scoping Review of Personalized, Interactive, Web-Based Clinical Decision Tools Available for Breast Cancer Prevention and Screening in the United States

A Scoping Review of Personalized, Interactive, Web-Based Clinical Decision Tools Available for Breast Cancer Prevention and Screening in the United States

A Community Health Worker Model to Support Hereditary Cancer Risk Assessment and Genetic Testing

Remotely Delivered Cancer Genetic Testing in the Making Genetic Testing Accessible (MAGENTA) Trial

Contact Info

Product

Resources

About