Lack of Early Oncofertility Education in Hematologic Cancer Patients Potentially Referable for HSCT

Background: Infertility frequently occurs in long-term survivors of hematopoietic stem cell transplant (HSCT). By the time patients are referred for HSCT, they have often undergone cancer treatments that cause infertility. The burden of early education falls on the hematology oncology team that cares for the patient upon initial cancer diagnosis. Comprehensive oncofertility education should include two areas: the risk of cancer treatment on future fertility and fertility preservation (FP) options. This study sought to characterize the education practice and attitudes of hematology oncology physicians and nurses towards oncofertility education in patients who may be HSCT eligible and to determine patients' interest in education.   

Methods: A multidisciplinary team developed 3 surveys to evaluate patients, nurses, and physicians using published literature and unique questions targeting our population. The University of Virginia's Institutional Review Board (IRB) authorized the surveys as IRB exempt. Practicing hematology oncology nurses and physicians were eligible. Potential HSCT eligible patients diagnosed with lymphoma, leukemia, or myeloma in the last 2 years and were either women ages 18-45 or men ages 18-60 at time of diagnosis were eligible.

Results: A total of 23 hematologic cancer patients ages 23-49 completed the survey as well as 43 providers (Figure 1). Education on the risk of cancer treatment on future fertility was received by 52% of patients, and only 26% of patients received FP options. 81% of women and 31% of men were interested in discussing their fertility, learning about FP options, or a fertility referral and counseling service. Of those interested, 67% received education on the risk of cancer treatment to fertility and 42% received FP education. Of interested patients who received education, 63% were satisfied with risk of cancer treatment education, and 80% were satisfied with FP education. Of the surveyed providers, 75% of nurses and 33% of physicians did not feel comfortable discussing FP options with patients and 89% of nurses and 86% of physicians felt they needed more information on FP options. Physicians indicated patients' illness and nurses indicated their own knowledge of FP as the greatest barriers to education (Figure 2).

Conclusions: The majority of hematology oncology patient participants did not receive comprehensive oncofertility education. Unfortunately, many patients interested in education did not receive it. Providers need oncofertility education to improve their ability to address topics. HSCT programs should collaborate with local fertility specialists to educate primary oncologists and potential HSCT patients, thereby increasing access to FP treatment and ensuring all patients of child-bearing potential receive education at time of cancer diagnosis.