Abstract
Introduction: The Adolescent and Young Adult (AYA) community is an underserved population due to their unique quality of life and late-effect issues not experienced in pediatric or older groups as well as their under-representation in clinical trials. One issue of particular concern to the AYA population is future fertility. For almost a decade the American Society for Clinical Oncology (ASCO) has identified and supported the need for oncologists to discuss fertility preservation with patients of reproductive age The updated 2013 ASCO guidelines expand the role of the physician to not only discuss fertility, but also to document this discussion in the medical record. This study sought to establish the existing rate of documentation of risk of infertility, discussion of fertility preservation options, and referrals to fertility specialists in AYA patients' medical records at three National Cancer Institute (NCI) Designated Comprehensive Cancer Centers who had received the FertileHope Center of Excellence award. As a secondary aim, the study examined whether documentation rates for each of these outcomes varied by institution, patient gender, or cancer site.
Methods: Each of the three sites reviewed a randomized, stratified selection of patient charts within each of the four disease sites most common in AYA populations (breast cancer, leukemia/lymphoma, sarcoma, and testicular cancer). Patient charts were eligible for review as part of the current study if they included new patients who: a) were diagnosed in 2011 with no prior gonadotoxic therapy; b) were between 18 and 45 years of age; c) did not have multiple primary cancers; and d) were not seen at the cancer center only as a second opinion or consultation. Quality Oncology Practice Initiative (QOPI) methods were used to collect evidence related to documentation of: a) discussion of risk of infertility; b) discussion of fertility preservation options; c) referral to a fertility specialist; or d) that a, b, c was not needed or was declined by patient).
Results: A total of 229 charts were abstracted among three cancer institutes A, B, and C, with 75 charts abstracted from breast, 76 from lymphoma/leukemia, 51 from sarcoma, and 27 from testicular. One hundred thirty (57%) abstracted charts were female patients. Overall, 31% of patient charts documented discussion of fertility risk, 25% documented discussion of fertility preservation options, and 14% documented referral to a fertility specialist. Documentation of discussion of fertility risk was differentially distributed by gender (p=0.009) and institute (p < 0.0001). Documentation of fertility preservation options discussion was differentially distributed by gender (p= 0.002), diagnosis (p = 0.001), and institute (p = 0.017).
Conclusion: The rate of documentation of discussion of fertility risk prior to initiation of therapy among AYA patients is low, particularly among women. In addition, documentation of fertility preservation options discussion was low among women with breast cancer. While greater numbers of discussions may be occurring, it is difficult to create interventions that may help meet this critical need for this underserved group without documentation in the medical record. Rates may improve with increased provider education and other national and local intervention efforts to raise awareness.
Citation Format: Ivana Sehovic, Rebecca Block, Marla L. Clayman, Susan Eggly, Brandon Hayes-Lattin, Joanne Kelvin, Ji-Hyun Lee, Joyce Reinecke, Susan T. Vadaparampil, Gwendolyn P. Quinn. Gender disparities in documentation of fertility risks among adolescents and young adults with cancer. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C44. doi:10.1158/1538-7755.DISP13-C44