This description of the FHCOE program, its criteria, and the additional features of the individual systems of the designees offers a starting point for the consideration of elements and strategies that may be helpful in the creation of cancer and fertility programs. To ascertain whether these criteria are effective and/or represent the best practices for such programs, evaluation measures need to be established. In our interviews, all of the designee centers identified the lack of evaluation measures as the most significant weakness of the program.
For example, quantitative measures for the number of professional education talks given, providers trained, patient brochures distributed, referrals made, fertility consultations provided, and so on could be easily established. Similarly, qualitative comparisons could be made of professional and patient materials and even of the impact of policy issuance. Analysis of these data would be a critical first step toward measuring the relative effectiveness of individual program components as well as the overall effectiveness of complete systems.
Although our interviews yielded no clear consensus about the specific measures needed, the emergence of the notification process as central to a successful system was evident. Studies and anecdotal evidence have shown for years that significant numbers of patients have not understood that their fertility might be compromised as a result of their cancer treatments or that options might be available to help mitigate this potential loss.2,5
Indeed, it is this finding that motivated the development of the FHCOE program. Thus, although we endorse all of the FHCOE criteria, we conclude that they are of secondary value to the notification process. These criteria enhance the likelihood that notice will occur and that it will be substantive and useful. For example, a policy confers authority to these efforts; professional education raises the knowledge base and comfort level of providers with regard to this topic; patient education augments basic comprehension; and referrals make the information actionable. However, until and unless a systematic approach ensures a transfer of information to the patient—actual notification—these additional system components are ineffectual and thereby superfluous.
By focusing on the effectiveness of contrasting notification systems, key aspects of that information can be compared. For example, was notification timely? Was the content satisfactory to the patient? Did it allow the patient to make informed decisions about the preservation of fertility? How is this transfer of information captured and recorded? Did the timing, delivery, or content of this notification affect the patient's immediate or long-term quality of life?
In our interviews, a trend toward use of electronic systems for patient intake, order entry, and clinical documentation was noted. Almost universally, the FHCOE contacts concurred that these systems were important tools in achieving more consistent patient notification. In fact, the institutions that did not use them at the time of their FHCOE designation were interested in future implementation.
Because of the centrality of the notification requirement, we believe that electronic systems offer key advantages over low-technology methods for a number of reasons. Embedding fertility reminders into electronic intake systems seems to increase the likelihood that patients will have discussions with their providers at as early a stage in treatment planning as possible—a result that is consistent with the PCP recommendations15
and ASCO guidelines.11
In practice, of course, early notification is critical for patients interested in accessing fertility preservation services.
In addition, electronic notification systems can be linked to objective patient criteria such as patient age, diagnosis, and treatment plan. Use of impartial triggers could ameliorate subjective barriers to notification and discussion noted in the literature, including provider discomfort with the subject matter, perceived financial status of the patient, biases about patients' sexual orientation or marital status, poor prognosis, and so on.1,16,17
Systems that capture fertility disclosures, discussions, and requests for referrals electronically also offer practical means for documenting and evaluating notification practices. Patterns and gaps in disclosure could be more easily identified (compared with similar hard-copy file reviews) and consequently remedied.
We acknowledge this review offers a subjective analysis of a single program designed to positively affect the disclosure of fertility information at a limited number of high-level, self-selected cancer centers. The data relied on were self-reported by the designees, because neither site visits nor third-party verification of practices were feasible. In addition, as discussed, evaluation measures to test the effectiveness of the FHCOE program criteria have yet to be established. Despite these limitations, we believe this review of cancer and fertility systems at highly credible, respected clinical institutions offers important insights into the development of such programs.
In conclusion, over the past several years, progress has been made in increasing the dialogue between oncology health care professionals and their patients about the potential implications of cancer treatment on future fertility and parenthood options. Publications have identified predominant barriers to patient notification; reports and guidelines have elucidated key features of sufficient notification. By creating systems that methodically attack these barriers and integrate these features, cancer centers can begin to meet their patients' fertility needs.
Although articulation of detailed best practices addressing the content and context of this information would be ideal, we believe that nonetheless, the time for the development of these systems has arrived. The ongoing failure to raise this topic with at-risk patients carries ethical and psychosocial implications at least as profound as those surrounding disclosure.
FH, LIVESTRONG, and other organizations have created numerous free patient and provider resources including financial assistance programs, educational brochures, and informational Web sites to support these programs. Simultaneous advances in reproductive medicine, including refinement of oocyte freezing, available institutional review board–approved ovarian tissue freezing, and advanced techniques for obtaining and using sperm, mean that fertility preservation is now a viable, realistic option for an ever-increasing number of patients. Perhaps most significantly, ASCO has published recommendations11
on fertility that obligate its members—oncology professionals—to proactively meet this challenge.
The programs described herein provide examples of systems that can be assembled in different types of clinical settings, depending on the available resources and infrastructure. Identification of an internal champion, coordination with aligned programs, and resource sharing are factors that may expedite implementation. As institutions design their own programs, measures to evaluate the critical notification process as well as the supportive system components should be integrated so that the identification of best practices within this context can occur.
We believe that widespread adoption of systematic approaches similar to those described in this article represent the next step in meeting patients' reproductive needs. LIVESTRONG is currently developing a program and resources to aid institutions in this endeavor. Cancer centers that incorporate and evaluate the baseline elements identified here—institutional endorsement (formal policy), professional education, patient information, patient referrals, and, most significantly, actual notice of reproductive risk in a timely, objective, documented fashion—will not only comply with the ASCO fertility recommendations but also fundamentally improve patients' quality of life.