Using health information technology to improve collection of family cancer history: prospective randomized trial of web-based tool in a gynecologic oncology outpatient clinic

Frey, M.K.; Lin, Jenny; Krinsky, Hannah; Nchako, Corbyn; Bolouvi, Karen; Litvin, Daniel; Wing, Noelani; Thomas, Charlene; Christos, Paul J.; Ahsan, Muhammad Danyal; Cantillo, Evelyn; Singh, Sidhant; Sharaf, Ravi; Chapman‐Davis, Eloise; Holcomb, Kevin

doi:10.1016/s0090-8258(21)00704-6

Cited by 5 publications

(8 citation statements)

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“…Frey et al found that a web-based tool resulted in significantly higher quality and the inclusion of more family members, making the pedigree more comprehensive 25. Our work concurred.…”

Section: Discussionsupporting

confidence: 87%

“…Earlier studies with larger samples showed that electronic capture of FHH improved accuracy, eliminated barriers, and allowed interventions more precise to the patient needs 7,13. Results from this project align with these as well as more recent research studies 24,25. As genomic research continues to advance, FHH becomes increasingly important.…”

Section: Discussionsupporting

confidence: 64%

“…Frey et al found that a web-based tool resulted in signifi cantly higher quality and the inclusion of more family members, making the pedigree more comprehensive. 25 Our work concurred. When FHH already in the established medical record was compared with the results from FamGenix, the latter showed more data acquired from family.…”

Section: Identifi Cation Of High-risk Patientssupporting

confidence: 64%

“…7,13 Results from this project align with these as well as more recent research studies. 24,25 As genomic research continues to advance, FHH becomes increasingly important. This project was successful in implementing work from larger studies with more resources to a small offi ce practice.…”

Section: Identifi Cation Of High-risk Patientsmentioning

confidence: 99%

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Establishing a process to improve the collection of family health history

Andrusko

Paradiso

2022

The Nurse Practitioner

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Knowledge of a person's potential to inherit certain diseases has rapidly become a valuable part of the discussion between provider and patient. Knowing the risk of hereditary disorders allows providers to include screening and diagnostic tests in a timely way. The family heath history is an easy and important tool for identifi cation of risk for genetic diseases, including cancers. A project, which incorporated patient education and technology, was developed to improve the collection of family health history and identify high-risk patientsfor genetic cancers and/or diseases.

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“…Frey et al found that a web-based tool resulted in significantly higher quality and the inclusion of more family members, making the pedigree more comprehensive 25. Our work concurred.…”

Section: Discussionsupporting

confidence: 87%

Section: Discussionsupporting

confidence: 64%

Section: Identifi Cation Of High-risk Patientssupporting

confidence: 64%

Section: Identifi Cation Of High-risk Patientsmentioning

confidence: 99%

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Establishing a process to improve the collection of family health history

Andrusko

Paradiso

2022

The Nurse Practitioner

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“…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

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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

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Opportunities for Improving Detection of Cancer Predisposition Syndromes in Pediatric Solid Tumor Patients

Hu,

Kirkey,

Wakeling

et al. 2024

Journal of Pediatric Hematology/Oncology

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Background: Detection of cancer predisposition syndromes (CPS) depends on identifying risk factors, including tumor type, family history, and physical findings, to prompt referral for genetic counseling/testing. Whether pediatric oncology providers (POPs) collect adequate family history information is unknown. Methods: A single-institution retrospective chart review of solid tumor patients <18 years of age referred for a CPS evaluation between January 1, 2017 and January 31, 2019 was performed. POP adherence to American Society of Clinical Oncology (ASCO) family history collection recommendations was measured and compared with genetic counselor performance. Whether sufficient family history was documented to satisfy the criteria of three genetic counseling referral guidelines [American College of Medical Genetics (ACMG), updated Jongmans (UJ), and McGill Interactive Pediatric OncoGenetic Guidelines (MIPOGG)] was evaluated. Results: POPs and genetic counselors achieved all 6 ASCO family history metrics in 3% and 99% of 129 eligible cases, respectively. POPs failed to document sufficient family history to satisfy genetic counseling referral criteria in most cases (74% ACMG, 73% UJ, 79% MIPOGG). Conclusions: POPs perform poorly in family history collection, raising concern that some patients at risk for a CPS based on their family history may not be referred for genetic counseling/testing. Interventions to improve family history collection are needed to enhance CPS detection.

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Using health information technology to improve collection of family cancer history: prospective randomized trial of web-based tool in a gynecologic oncology outpatient clinic

Cited by 5 publications

References 0 publications

Establishing a process to improve the collection of family health history

Establishing a process to improve the collection of family health history

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

Opportunities for Improving Detection of Cancer Predisposition Syndromes in Pediatric Solid Tumor Patients

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