Testing a Population-Based Outreach Intervention for Ovarian Cancer Survivors to Encourage Their Close Relatives to Consider Genetic Counseling

Overview

Journal Cancer Epidemiol Biomarkers Prev

Specialties Biochemistry
Oncology
Public Health

Date 2024 Jun 24

PMID 38912902

Authors

Yue Guan

Colleen M McBride

Jingsong Zhao

Rebecca D Pentz

Cam Escoffery

Yuan Liu

Yichun Cao

Weihua An

James A Shepperd

Kevin C Ward

Affiliations

Soon will be listed here.

Abstract

Background: Most relatives of women with ovarian cancer are unaware of their increased risk for cancer and their eligibility for genetic counseling. State cancer registries offer a platform to communicate about inherited risk to this population.

Methods: We conducted a two-arm randomized trial to test a theory-based communication intervention-Your Family Connects (YFC)-compared to the standard Georgia Cancer Registry (GCR) contact. A total of 1,938 eligible ovarian cancer survivors were randomly assigned to either the YFC arm (n = 969) or the Standard Care arm (n = 969). We assessed the number of ovarian cancer survivors and their close relatives who logged on to the study website by arm.

Results: Survivor reach was significantly higher in the Standard Care arm than YFC (20.8% vs. 15.2%, respectively; P < 0.001). However, reach to relatives was limited to listed relatives in the YFC arm (n = 20, 13.2%), with little participation from those in the Standard Care arm (n = 1, 0.4%). Pooling across arms, minority race, longer time since diagnosis, and older age were all significantly associated with a decreased likelihood that the survivor accessed the website.

Conclusions: The YFC intervention showed lower effectiveness for engaging survivors but was more effective than Standard Care in engaging at-risk relatives. Other factors (e.g., time since diagnosis) associated with lower reach must be considered in refining future outreach approaches.

Impact: Partnering with a state cancer registry to foster family communication about inherited cancer risk is feasible but the possibility for broad population reach warrants further testing.

References

Rogerino A, Grant L, Wilcox 3rd H, Schmitz K . Geographic recruitment of breast cancer survivors into community-based exercise interventions. Med Sci Sports Exerc. 2009; 41(7):1413-20. DOI: 10.1249/MSS.0b013e31819af871. View

Konstantinopoulos P, Norquist B, Lacchetti C, Armstrong D, Grisham R, Goodfellow P . Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer: ASCO Guideline. J Clin Oncol. 2020; 38(11):1222-1245. PMC: 8842911. DOI: 10.1200/JCO.19.02960. View

McBride C, Emmons K, Lipkus I . Understanding the potential of teachable moments: the case of smoking cessation. Health Educ Res. 2003; 18(2):156-70. DOI: 10.1093/her/18.2.156. View

Mazanec S, Flocke S, Daly B . Health behaviors in family members of patients completing cancer treatment. Oncol Nurs Forum. 2014; 42(1):54-62. PMC: 5556978. DOI: 10.1188/15.ONF.54-62. View

Daly M, Pilarski R, Yurgelun M, Berry M, Buys S, Dickson P . NCCN Guidelines Insights: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic, Version 1.2020. J Natl Compr Canc Netw. 2020; 18(4):380-391. DOI: 10.6004/jnccn.2020.0017. View

Lipscomb J, Escoffery C, Gillespie T, Henley S, Smith R, Chociemski T . Improving Screening Uptake among Breast Cancer Survivors and Their First-Degree Relatives at Elevated Risk to Breast Cancer: Results and Implications of a Randomized Study in the State of Georgia. Int J Environ Res Public Health. 2020; 17(3). PMC: 7037204. DOI: 10.3390/ijerph17030977. View

Owen J, Bantum E, Criswell K, Bazzo J, Gorlick A, Stanton A . Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples. J Behav Med. 2013; 37(4):630-41. PMC: 3842405. DOI: 10.1007/s10865-013-9509-6. View

Nycum G, Avard D, Knoppers B . Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. Eur J Hum Genet. 2009; 17(7):872-80. PMC: 2986497. DOI: 10.1038/ejhg.2009.33. View

Cadmus Bertram L, Chung G, Yu H, Salovey P, Irwin M . Feasibility of institutional registry-based recruitment for enrolling newly diagnosed breast cancer patients in an exercise trial. J Phys Act Health. 2011; 8(7):955-63. DOI: 10.1123/jpah.8.7.955. View

10.

Baroutsou V, Underhill-Blazey M, Appenzeller-Herzog C, Katapodi M . Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis. Cancers (Basel). 2021; 13(4). PMC: 7926393. DOI: 10.3390/cancers13040925. View

11.

Gaff C, Clarke A, Atkinson P, Sivell S, Elwyn G, Iredale R . Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet. 2007; 15(10):999-1011. DOI: 10.1038/sj.ejhg.5201883. View

12.

Ramirez A, Miller A, Gallion K, San Miguel de Majors S, Chalela P, Garcia Aramburo S . Testing three different cancer genetics registry recruitment methods with Hispanic cancer patients and their family members previously registered in local cancer registries in Texas. Community Genet. 2008; 11(4):215-23. DOI: 10.1159/000116882. View

13.

Owens D, Davidson K, Krist A, Barry M, Cabana M, Caughey A . Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer: US Preventive Services Task Force Recommendation Statement. JAMA. 2019; 322(7):652-665. DOI: 10.1001/jama.2019.10987. View

14.

Walter J, Friedman Ross L . Relational autonomy: moving beyond the limits of isolated individualism. Pediatrics. 2014; 133 Suppl 1:S16-23. DOI: 10.1542/peds.2013-3608D. View

15.

McBride C, Campbell G, Zhao J, Pentz R, Escoffery C, Komonos M . Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies. PLoS One. 2022; 17(2):e0262575. PMC: 8843236. DOI: 10.1371/journal.pone.0262575. View

16.

Samimi G, Bernardini M, Brody L, Caga-Anan C, Campbell I, Chenevix-Trench G . Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach. J Clin Oncol. 2017; 35(20):2329-2337. PMC: 5501360. DOI: 10.1200/JCO.2016.70.3439. View

17.

Rogers M, Lemmen K, Kramer R, Mann J, Chopra V . Internet-Delivered Health Interventions That Work: Systematic Review of Meta-Analyses and Evaluation of Website Availability. J Med Internet Res. 2017; 19(3):e90. PMC: 5384996. DOI: 10.2196/jmir.7111. View

18.

Gasteiger N, Vercell A, Khan N, Dowding D, Davies A, Davies A . Digital interventions for genomics and genetics education, empowerment, and service engagement: A systematic review. J Community Genet. 2023; 14(3):227-240. PMC: 10271952. DOI: 10.1007/s12687-023-00648-w. View

19.

Asiedu G, Ridgeway J, Carroll K, Jatoi A, Breitkopf C . "Ultimately, mom has the call": Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy. Health Expect. 2018; 21(6):981-989. PMC: 6250882. DOI: 10.1111/hex.12691. View

20.

Zhao J, McBride C, Campbell G, Pentz R, Escoffery C, Konomos M . Your Family Connects: A Theory-Based Intervention to Encourage Communication about Possible Inherited Cancer Risk among Ovarian Cancer Survivors and Close Relatives. Public Health Genomics. 2023; 26(1):77-89. PMC: 10614520. DOI: 10.1159/000531772. View