Abstract B29: Screening and communication with physicians for women with Lynch syndrome: Findings from a qualitative study

Abstract

Abstract Background: Lynch syndrome, which is also known as hereditary non-polyposis colon cancer (HNPCC), is an autosomal dominant hereditary cancer syndrome that confers women with a 40–60% lifetime risk of endometrial cancer (EC) and a 12% lifetime risk of ovarian cancer (OC). Consensus statements recommend annual EC and OC screening for women with Lynch syndrome, initiated at age 30–35 or 10 years younger than the earliest known case in the family. This study evaluated the prevalence of EC and OC screening behaviors among women at risk for Lynch syndrome, and communication with their physicians about EC and OC risk and screening needs. Methods: Women age > 25 years who were at risk for Lynch syndrome-related cancers, and who had not had both a hysterectomy and oophorectomy, completed a semi-structured interview either in person or over the phone. The domains covered included demographics and medical history, knowledge of screening recommendations, screening for Lynch-syndrome associated gynecological cancers, and physician-patient communication. SPSS and NVivo™ were used for data analysis. Results: Fifty-two women (mean=40.6 years old) participated. They were mostly white, married, well-educated, and had children. Approximately 70% were Lynch-syndrome mutation carriers while the remaining 30% met the Amsterdam II criteria. Approximately 70% reported a family history of EC or OC. All but five had received genetic counseling regarding their risk for Lynch syndrome. Half of the participants correctly answered questions about the appropriate age to begin screening, while approximately 75% correctly assessed the recommended screening frequency. Approximately half of the women reported never having had asymptomatic gynecological screening. Between 15 and 38% were currently adherent to screening recommendations because they received screening as part of a research study. Women who were seeing non-oncology gynecologists were not offered appropriate EC or OC screening, although they uniformly expressed a high level of trust and value in the care provided by these physicians and believed that their physicians were doing the best job possible to manage their health needs. Approximately 33% of the women report that cost and lack of insurance might prevent their screening adherence in the future. Conclusions: Lynch syndrome-affected families and their primary care physicians may lack accurate knowledge of EC and OC risks. Women who are at risk for Lynch syndrome may not receive appropriate EC or OC screening from their community physicians, and new prevention-communication strategies may be needed. Participation in research studies may improve adherence to screening for gynecologic cancers in Lynch syndrome. Citation Information: Cancer Prev Res 2011;4(10 Suppl):B29.