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Cited by 42BRCA gene mutations in cancerGenetic factors in colorectal cancerGlobal Cancer Incidence and Screening

Systemic Barriers to Risk-Reducing Interventions for Hereditary Cancer Syndromes: Implications for Health Care Inequities

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Mittendorf, Kathleen F., Knerr, Sarah, Kauffman, Tia L., Lindberg, Nangel M., Anderson, Katherine P., Feigelson, Heather Spencer, Gilmore, Marian J., Hunter, Jessica Ezzell +6 more·2021·JCO Precision Oncology
DOI 10.1200/po.21.00233PMC PMC8585306
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Abstract

Hereditary cancer syndromes result from germline genetic alterations predisposing individuals to higher lifetime cancer risk than the general population. Hereditary cancer syndromes account for 5%-10% of all malignancies and are characterized by early-onset, aggressive tumors affecting multiple tissue types.1 For example, patients with hereditary breast and ovarian cancer syndrome (HBOC) have high lifetime risk of breast (41%-90%) and ovarian (8%-62%) cancers and elevated risk for several other cancers.2 Similarly, patients with Lynch syndrome (LS) have high lifetime risk of colorectal (12%-52%) and endometrial (0%-57%) cancers, as well as other cancers.3 Reduced cost of genetic technologies4 and new guidance on collecting family history in primary care5 have enabled better detection of these syndromes, providing opportunities to reduce cancer risk. CONTEXT Key Objective Individuals with hereditary cancer syndromes are predisposed to higher lifetime cancer risk than the general population. Early diagnosis of these syndromes can lead to downstream care that greatly reduces cancer morbidity and mortality. In this narrative review, we explore the factors affecting uptake of and adherence to hereditary cancer risk reduction strategies and how these factors interact with systemic barriers to care in medically marginalized populations. Knowledge Generated We identified factors at the health system, clinician, and patient levels that interact to affect downstream hereditary cancer care and have implications for health equity. We found that several interventions designed to improve downstream care utilization did not address systemic barriers affecting marginalized populations and suggest strategies to address these barriers in future intervention design. Relevance Our review creates a template for the design of more equitable interventions to improve downstream hereditary cancer care.

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  • Uptake and adherence to risk-reducing surgery recommendations is relatively low.

    “Uptake and adherence to RRS recommendations is relatively low [46, 47].”

    From Screening, Risk Reduction Strategies, and Clinical Management of Unaffected Carriers of <i>BRCA1</i> or <i>BRCA2</i> Pathogenic Variants (2026) · cites this paper as [46]

    The Introduction reports low adherence to risk-reducing care recommendations at a high-risk breast cancer clinic and describes barriers that affect uptake of risk-reducing surgery. It does not establish that uptake and adherence to surgery recommendations are generally low; the low-adherence finding is not specified as surgical. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

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References 107 · Cited by 42

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Authors
Mittendorf, K. F., Knerr, S., Kauffman, T. L., Lindberg, N. M., Anderson, K. P., Feigelson, H. S., Gilmore, M. J., Hunter, J. E., Joseph, G., Kraft, S. A., Zepp, J. M., Syngal, S., Wilfond, B. S., & Goddard, K. A. B.
Affiliations
  • Kaiser Permanente (US)
  • University of Washington (US)
  • Denver Health Medical Center (US)
  • University of California, San Francisco (US)
  • Seattle Children's Hospital (US)
  • Brigham and Women's Hospital (US)
ORCID
Venue
JCO Precision Oncology
Publisher
American Society of Clinical Oncology (ASCO)
Published
2021-11
Volume
5
Issue
5
Pages
1709-1718
ISSN
2473-4284 (ISSN-L)
DOI
10.1200/po.21.00233
PMC
PMC8585306
OpenAlex
W3208689935
Cited by
42
References
107
Citations by year
2026: 11 · 2025: 4 · 2024: 8 · 2023: 12 · 2022: 7
FWCI
0.99
Type
journal article
Language
en
Open access
Locations
  • JCO Precision Oncology (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
National Human Genome Research Institute (U24HG007307, U01HG007292)
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
  • Health Sciences › Medicine › Pathology and Forensic Medicine › Genetic factors in colorectal cancer
  • Health Sciences › Medicine › Oncology › Global Cancer Incidence and Screening
Keywords
hereditary cancer, risk-reducing interventions, health care inequities, hereditary breast and ovarian cancer, Lynch syndrome, family history collection
MeSH terms
Systemic Racism, Humans, Neoplastic Syndromes, Hereditary, Professional-Patient Relations, Social Behavior, Risk Reduction Behavior, Health Status Disparities, Health Literacy

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