- •Hospital-based Traceback results in minimal uptake of genetic counseling and genetic testing services.
- •Hospital-based Traceback is time intensive and may burden an already busy clinical practice.
- •Biological relatives were more likely than unrelated contact persons to respond positively to telephone contact.
- •Offering genetic counseling and testing services during active oncology may be the most effective strategy to ensure uptake.
To determine the feasibility of hospital-based genetic counseling and testing (GC/T) Traceback for Ovarian Cancer (OC) patients, as proposed by the Division of Cancer Prevention and the Division of Cancer Control and Population Sciences, National Cancer Institute.
Living patients with OC were sent a letter explaining the availability of guideline-supported GC/T for at least BRCA1/2 and surrogates of deceased patients were called on the telephone. Outcomes of contact attempts were systematically recorded and statistically described.
598 Traceback-eligible OC patients diagnosed from 2006 to 2016 were identified (163 presumed-living and 435 deceased). Two living patients called our office and scheduled an appointment for GC/T after receiving a letter. For surrogates of prior patients, successful contact occurred in 25% of call attempts. Fourteen individuals (2 living patients and 12 surrogates) underwent genetic counseling. Of those 14, 10 individuals consented to genetic testing and 5 followed through with sample collection. None of these individuals had pathogenic variants (PVs). When surrogate call notes were reviewed, 58% reflected positive responses to contact, however 42% were noted to have negative or indifferent responses, which were most common among spouses. Total time spent for hospital-based Traceback was 109 h.
Overall, hospital-based Traceback via letter and telephone contact of surrogates is time-intensive and results in minimal uptake of GC/T. To practically execute this type of outreach program, health systems should consider collection of alternative contact information to allow for electronic communication of patient surrogates. Our study also underscores the importance of timely GC/T while patients are in active cancer care.
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- Screening for ovarian cancer: updated evidence report and systematic review for the US preventive services task force.JAMA. 2018; 319: 595https://doi.org/10.1001/jama.2017.21421
- Traceback: a proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach.J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol. 2017; 35: 2329-2337https://doi.org/10.1200/JCO.2016.70.3439
- Hereditary breast and ovarian cancer syndrome. Practice Bulletin No. 182.Obstet. Gynecol. 2017; 130 (2017): e110-e126
- Genetic Testing for Gynecologic Cancer.(October 01)
- Germline and somatic tumor testing in epithelial ovarian cancer: ASCO guideline.J. Clin. Oncol. 2020; 38 (Apr 10): 1222-1245https://doi.org/10.1200/JCO.19.02960
- A comprehensive program enabling effective delivery of regional genetic counseling.Int. J. Gynecol. Cancer. 2018; 28: 996-1002https://doi.org/10.1097/IGC.0000000000001256
- National estimates of genetic testing in women with a history of breast or ovarian cancer.J. Clin. Oncol. 2017; 35: 3800-3806https://doi.org/10.1200/JCO.2017.73.6314
- Underutilization of BRCA1/2 testing to guide breast cancer treatment: black and Hispanic women particularly at risk.Genet. Med. 2011; 13: 349-355https://doi.org/10.1097/GIM.0b013e3182091ba4
- Genetic consultation embedded in a gynecologic oncology clinic improves compliance with guideline-based care.Gynecol. Oncol. 2017; 147: 110-114https://doi.org/10.1016/j.ygyno.2017.07.141
- Genetic testing and results in a population-based cohort of breast cancer patients and ovarian cancer patients.J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol. 2019; 37: 1305-1315https://doi.org/10.1200/JCO.18.01854
- Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe.Eur. J. Hum. Genet. 2018; 26: 946-954https://doi.org/10.1038/s41431-018-0131-5
- Disparities in genetic testing: thinking outside the BRCA box.J. Clin. Oncol. 2006; 24: 2197-2203https://doi.org/10.1200/JCO.2006.05.5889
- Determinants of genetic counseling uptake and its impact on breast cancer outcome: a population-based study.Breast Cancer Res. Treat. 2014; 144: 379-389https://doi.org/10.1007/s10549-014-2864-3
- National distribution of cancer genetic testing in the United States: evidence for a gender disparity in hereditary breast and ovarian cancer.JAMA Oncol. 2018; 4: 876https://doi.org/10.1001/jamaoncol.2018.0340
- Distrust of the health care system and self-reported health in the United States.J. Gen. Intern. Med. 2006; 21: 292-297https://doi.org/10.1111/j.1525-1497.2006.00396.x
- Professional Status Survey 2020: Work Environment.24. 2020
- Duty to warn 4.0.Prof. Case Manag. 2019; 24: 160-164https://doi.org/10.1097/NCM.0000000000000364
- Duty to warn in the era of next generation sequencing.Am. J. Bioeth. 2018; 18: 79-80https://doi.org/10.1080/15265161.2018.1478045
- Professional disclosure of familial genetic information.Am. J. Hum. Genet. 1998; 62: 474-483https://doi.org/10.1086/301707
- Mutations in homologous recombination genes and outcomes in ovarian carcinoma patients in GOG 218: an NRG oncology/gynecologic oncology group study.Clin. Cancer Res. 2018; 24: 777-783https://doi.org/10.1158/1078-0432.CCR-17-1327
- BRIP1, RAD51C, and RAD51D mutations are associated with high susceptibility to ovarian cancer: Mutation prevalence and precise risk estimates based on a pooled analysis of ~30,000 cases.J. Ovarian Res. 2020; 13: 50https://doi.org/10.1186/s13048-020- 00654-3
- Mutations in 12 genes for inherited ovarian, fallopian tube, and peritoneal carcinoma identified by massively parallel sequencing.Proc. Natl. Acad. Sci. U. S. A. 2011; 108: 18032-18037https://doi.org/10.1073/pnas.1115052108
- Psychological aspects of genetic counseling: a legal perspective.Am J Med Genet. 1994; 50 (PMID: 8042666): 234-238https://doi.org/10.1002/ajmg.1320500305
- Genetic counseling for breast cancer risk: general concepts, challenging themes and future directions.Breast Dis. 2006-2007; 27: 69-96https://doi.org/10.3233/bd-2007-27105. PMID: 17917141
- Changing interpretations, stable genes: responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genetic information.Genet Med. 2008; 10 (PMID: 18941419): 778-783https://doi.org/10.1097/GIM.0b013e31818bb38f
- Guidelines for disclosing genetic information to family members: From development to use.Familial Cancer. 2006; 5: 103-116https://doi.org/10.1007/s10689-005-2581-5
- Genetic counseling, 2030: An on-demand service tailored to the needs of a price conscious, genetically literate, and busy world.J. Genet. Couns. 2019; 28: 456-465https://doi.org/10.1002/jgc4.1123
- Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.Genetics in Medicine. 2015; 17: 668-687https://doi.org/10.1038/gim.2014.173
- Alternate Service Delivery Models in Cancer Genetic Counseling: A Mini-Review.Frontiers in Oncology. 2016; 6https://doi.org/10.3389/fonc.2016.00120
- Mainstreaming cancer genetics: A model integrating germline BRCA testing into routine ovarian cancer clinics.Gynecol. Oncol. 2017; 145: 130-136https://doi.org/10.1016/j.ygyno.2017.01.030
- The effect of a celebrity health disclosure on demand for health care: Trends in BRCA testing and subsequent health services use..Journal of Community Genetics. 2017; 8: 141-146https://doi.org/10.1007/s12687-017-0295-7
Published online: January 05, 2022
Accepted: December 21, 2021
Received in revised form: December 18, 2021
Received: October 5, 2021
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