Kidney Cancer · Published 2025-10-28 · Journal article · DOI 10.1177/24684562251391575
Lindsey Byrne, Peyton Nunley, Kristen Pauley, Joseph McElroy, Rachelle Manookian, Samantha E. Greenberg
Background: While hereditary renal cell carcinoma (RCC) syndromes account for up to 16% of RCC cases and have screening guidelines; no screening recommendations exist for individuals with family history of RCC and negative genetic testing (familial RCC risk). Objective: This study aimed to assess current practices regarding screening recommendations for patients with familial RCC risk, evaluate the perceived need for formalized screening guidelines, and identify optimal clinician involvement for developing such guidelines. Methods: We surveyed healthcare providers who provide medical care for RCC patients, assessing current familial RCC screening practices, the need for and process of developing empiric risk guidelines, and case-based scenarios to understand current practice. This IRB-approved survey was distributed using listservs, professional connections, and snowball methods. Descriptive statistics and qualitative coding were used to analyze the data. Results: Seventy healthcare providers participated, primarily genetic counselors (n = 46; 66%) and medical oncologists (n = 11; 16%). Respondents indicated that: 1) screening guidelines are needed (n = 64; 91%) for familial RCC risk; 2) RCC patients inquired about the risk of RCC to family members after receiving negative genetic test results (n = 59; 84%, sometimes, often, or always); and 3) asked about screening recommendations for family members with similar frequency (n = 56, 80%). Respondents varied on the optimal screening mechanism and indications for screening unaffected relatives of RCC patients. Conclusions: Our findings show providers need screening guidelines to address patient inquiries, guide clinical management, and improve insurance coverage. Respondents agreed that there was a need for a multi-disciplinary team to develop standardized recommendations.
Abstract from DOAJ. Public domain (CC0 1.0).
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Byrne, L., Nunley, P., Pauley, K., et al. (2025). Assessing genetic and urologic providers on renal screening recommendations for individuals with a familial renal cancer risk. Kidney Cancer. https://doi.org/10.1177/24684562251391575