Northwestern University and Robert H. Lurie Comprehensive Cancer Center, Chicago, IL
M. L. Clayman , M. Harper , G. P. Quinn , S. Shah , J. Reinecke
Background: NCI-designated Comprehensive Cancer Centers (CCCs) have a reputation for providing exemplary patient care. ASCO guidelines suggest quality care includes discussions of and provision of referrals to fertility specialists for patients who may be at risk for sterility. Yet there is evidence that fertility preservation (FP), also known as oncofertility, is not universally offered at CCCs. The goal of this study was to determine what FP resources are available and how well those are integrated into patient care at NCI-designated CCCs. Methods: The director of the Lurie CCC sent a letter by e-mail attachment to leaders at each CCC, including center directors and program leaders in areas such Survivorship. The letter requested a 30 minute telephone interview with a person (or persons) at the CCC who could provide information about the institution’s FP resources. Interviews were conducted using a semi-structured interview guide and responses audio-recorded. Content analysis was used to identify key themes across the centers. Results: Interviews were conducted with leaders at 30 of the 39 CCCs that see adult patients. Of the other sites, 4 did not respond to repeated requests, 3 referred us to clinics for childhood cancer survivors, 1 refused, and 1 could not identify any FP resources. Participants were based primarily in reproductive endocrinology (n=15) and hematology/oncology (n=10). Only 4 sites reported having any institutional guidelines regarding FP, while 20 have some form of educational material for patients. Models of practice varied widely: few sites had formal FP programs, with directors affiliated in reproductive endocrinology, survivorship clinics, and hematology/oncology. Those that reported good coordination among subspecialties used means such as patient navigators or fertility hotlines to ensure timely access to referral. Conclusions: CCCs have variable policies and procedures for providing information about and access to FP resources. CCCs are in a position to set the standard for providing exemplary oncofertility care, but most need to better integrate FP information and referral into their cancer treatment and survivorship models. Currently, few CCCs seem to be following ASCO guidelines.
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