Results from the survey for preservation of adolescent reproduction (SPARE) study: gender disparity in delivery of fertility preservation message to adolescents with cancer

Abstract

Purpose Diminished reproductive capacity is a devastating consequence of life-sparing therapies for childhood malignancy. In 2006, the American Society of Clinical Oncology (ASCO) published fertility preservation recommendations (ASCOR) emphasizing the importance of early discussion and intervention for fertility preservation strategies. Using the Survey for Preservation of Adolescent REproduction (SPARE), we sought to determine fertility preservation attitudes and practice patterns post-ASCOR from pediatric oncology specialists nationwide. Materials and methods The SPARE survey consists of 22 questions assessing pediatric oncology specialists' attitudes and practice patterns toward fertility preservation. Broad perspectives on fertility preservation, including a willingness to discuss fertility, knowledge of current fertility preservation methods and awareness of ASCOR, were assessed. Genet (2011) 28:269-277 DOI 10.1007 Capsule The SPARE survey captured marked disparities between pediatric oncologists' attitudes and practice patterns regarding fertility preservation for male and female pediatric oncology patients. Statement of Financial SupportResults The majority of respondents acknowledged that fertility threats are a major concern for them and agreed that all pubertal cancer patients should be offered a fertility consultation, but only 46% reported they refer male pubertal cancer patients to a fertility specialist prior to cancer treatment >50% of the time, and only 12% reported they refer female pubertal cancer patients to a fertility specialist prior to cancer treatment > 50% of the time. While 44% of respondents were familiar with the 2006 ASCOR, only 39% of those utilized them to guide decision-making in greater than half of their patients. Conclusion Our study demonstrates pediatric oncologists' motivation to preserve fertility in pediatric cancer patients; however, barriers to both gamete cryopreservation and referral to fertility specialists persist. Female pubertal patients are referred to fertility preservation specialists with much less frequency than are male pubertal patients, highlighting a disparity.

Fertility issues in patients with hematologic malignancies

“…It is notable that perhaps the greatest barrier to sperm banking is failure to refer these patients: fewer than one-half of oncologists consistently refer male patients for sperm cryopreservation. 52,53 Experimental techniques in men include testicular tissue cryopreservation, which is subject to the same concerns and challenges as ovarian tissue banking, with perhaps even greater worry about tissue contamination in patients with ALL, as the testis is a known sanctuary site. 54 Children Pre-pubertal children are candidates only for experimental approaches, such as harvesting gonadal tissue for cryopreservation.…”

Childhood to adult transition and long-term follow-up after blood and marrow transplantation

“…65 Sperm may be cryopreserved prior to BMT and used years later for artificial insemination, in vitro fertilization or in in vitro injection into the cytoplasm of an oocyte. 23 Traditional sperm donation requires that the patient has achieved pubertal development, but for pre-pubescent boys, preservation of testicular tissue is being increasingly utilized in many medical institutions in the Western world.…”

A Review of the Oncology Patient's Challenges for Utilizing Fertility Preservation Services

“…While 85% of providers surveyed acknowledged that fertility was a significant concern for their patients and families, 18 only 39% reported using the ASCO guidelines at least 25% of the time to make decisions regarding the patient's future fertility. 19 Providers have identified challenges to providing fertility information to their patients, such as limited education and clinical constraints. [20][21][22] Patients are also not likely to ask for information or initiate the discussion, leaving fertility concerns unaddressed in treatment plans.…”

“…Misperceptions, or assumptions, about the cost of fertility preservation methods can also contribute to the limited fertility information received by patients. 19,20,57 Some providers may assume that cost will be a significant barrier and avoid raising the topic with patients and patient studies suggest cost is a significant factor in decisional conflict surrounding fertility preservation treatment. 24,39 Arming providers with accurate financial information and providing patients with financial resources will allow patients to weigh the cost of fertility preservation options in discussions about their future fertility desires.…”