NCI-designated comprehensive cancer centers (CCCs) set the standard for providing exemplary patient care. Quality cancer care includes discussions about fertility and referrals to fertility specialists for patients at risk for sterility. This study sought to determine what fertility preservation (FP) resources are available in CCCs and how well those are integrated into patient care. Leaders at each CCC received a letter requesting a short telephone interview with individuals who could provide information about the institution’s FP resources. A semi-structured interview guide was used and responses were audio-recorded. Data were analyzed using content and thematic analysis. Interviews were conducted with 30 of the 39 CCCs that see adult patients (77%). The remaining institutions included 4 nonresponders, 3 that referred the interviewers to childhood cancer survivorship clinics, 1 that refused, and 1 that could not identify any FP resources. Participants were primarily affiliated with reproductive endocrinology (n=15) or hematology/oncology divisions (n=10). Institutional policies regarding consistent provision of FP information were rare (n=4), although most sites (n=20) either had some services on-site or had referral programs (n=8). However, only 13 had some experimental services, such as ovarian tissue cryopreservation. Respondents reported barriers to provision of FP, including oncologists’ identification of patients at risk, low referral rates, and perceptions of patient prognosis. Only 8 (27%) sites had staff with time dedicated to FP. CCCs vary widely in implementing FP-recommended practice to their patients. CCCs are positioned to provide exemplary oncofertility care, but most need to better integrate FP information and referral into practice.
Marla L. Clayman, Maya M. Harper, Gwendolyn P. Quinn, Joyce Reinecke and Shivani Shah
Gwendolyn P. Quinn, Susan T. Vadaparampil, Clement K. Gwede, Joyce D. Reinecke, Tina M. Mason and Celso Silva
The goal of this project was to develop a referral system to increase the likelihood that patients of childbearing age with newly diagnosed cancer receive timely information about fertility, and reduce the burden oncologists may feel when discussing and exploring fertility preservation options with their patients. The group developed and examined the effectiveness of a fertility preservation referral system through pilot-testing a developed patient education brochure. During the 12-month pilot-testing period, 776 patients of childbearing age (< 40 years) were seen at H. Lee Moffitt Cancer Center and 349 brochures were taken. The reproductive endocrinologist/infertility clinic experienced a 9-fold increase in the number of calls received during the 12-month study period, with 122 calls received compared with 13 the prior year. The large increase in calls illuminates the gap in patient interest and referral, and shows an effective method to transmit this information. Improving the communication of time-sensitive information about fertility and preservation options to patients with cancer is associated with an increased likelihood of improving quality of life, reducing patient distress, and increasing use of ancillary fertility-related health services. Through referring and providing patient information, this referral system allows oncologists to fulfill their obligation and make informed decisions about fertility preservation, thereby improving the full cancer care continuum.