Fertility Preservation after a Cancer Diagnosis: A Systematic Review of Adolescents', Parents', and Providers’ Perspectives, Experiences, and Preferences

Abstract

Study Objective Survival into adulthood is now a reality for many adolescents facing cancer. FP (Fertility Preservation) is a rapidly advancing field, but oncology providers and health systems struggle to incorporate the newest FP technologies into the clinical care of adolescents. Our objective was to systematically review and synthesize the available data regarding the perspectives, experiences, and preferences of adolescents, parents, and oncology providers about FP to inform clinical implementation of FP technologies. Design Five electronic databases (PubMed, Embase, Web of Knowledge, CINAHL, PsychInfo) were systematically searched for studies published between January 1999 and May 2014. Adolescents were defined as 12-18y at diagnosis or designated as pubertal/post pubertal and <18yrs. Studies were assessed for methodological quality, data were extracted using a standardized form, and results were synthesized using guidelines for a narrative syntheses of both quantitative and qualitative data. Results In total, 1237 records were identified, with 22 articles, 17 unique studies meeting the inclusion criteria. The following topics were consistently observed across studies and populations: 1. “Fertility in Trust”, 2. Decision Making Challenges, 3. Provider Knowledge and Practices, and 4. Discrepancies between Desired and Actual Experiences. Conclusions Despite the challenges associated with a new cancer diagnosis, adolescents and parents value the opportunity to discuss fertility concerns and preservation options. Providers play an important role in addressing these topics for families and efforts should be made to incorporate FP discussions into routine cancer care for all adolescents, with attention paid to the unique needs of adolescents and their parents.

Challenges in fertility preservation among male adolescent and young adult cancer survivors

“…suggest the influence of a developmental perspective on adolescent decision making . A systematic review of FP perspectives among patients, parents, and providers supports this hypothesis . Across several studies, AYA survivors increasingly value future parenthood and reported regret about prior decisions or limited options for FP.…”

“…Literature on parenting desires among childless adults in the general population has found that age and relationship formation are significant factors in the timing of childbearing goal‐adjustment . Although young male patients and survivors may not presently prioritize fatherhood, throughout the literature, adolescents cited a desire to keep options open as a factor in pursuing FP …”

“…7Numerous barriers to FP have been identified by oncology patients, parents, and providers, including limited education, clinical constraints, difficulty accessing resources, perceived high cost, sensitivity of the topic, and focus on short-term treatment and survival. 4,5,8 Patients and clinicians alike may be deterred from FP by the fear that it will delay prompt initiation of treatment, a concern that is most relevant among female patients who have to undergo ovarian stimulation.Financial considerations are also a significant factor for patients who are considering FP. Sperm processing, cryopreservation, and storage fees can be costly, and are inconsistently covered by insurance.…”

“…5,8,9 Despite these perceived concerns, research indicates that young patients appreciate when issues of fertility and sexual function are addressed, even those with no desire for future children. 4,8 However, AYA are unlikely to initiate these conversations and clinicians must be proactive in their fertility discussions. Additionally, patients and their families should be educated about all options for sperm collection in addition to traditional sperm banking, including electroejaculation, testicular sperm extraction, and penile vibratory stimulation.…”

20 jaar semencryopreservatie: haalbaarheid en verwijspatronen

“…Uit een systematische review van internationale studies met oncologische patiënten bleek dat, ten tijde van de kankerdiagnose, in wisselende mate (30-87 % van de gevallen) counseling plaatsvindt over fertiliteit, effecten van de therapie op fertiliteit en fertiliteitspreservatie [6]. In de dagelijkse praktijk is het bespreken van fertiliteit niet de eerste prioriteit tijdens een slechtnieuwsgesprek over een kankerdiagnose.…”