J. Vaught1,2, K. S. Corkum2,3, C. J. Harris2,3, E. E. Rowell2,3 1Feinberg School Of Medicine – Northwestern University,Chicago, IL, USA 2Ann & Robert H. Lurie Children’s Hospital of Chicago,Pediatric Surgery,Chicago, IL, USA 3Feinberg School Of Medicine – Northwestern University,Surgery,Chicago, IL, USA
Introduction:
With increasing survival of childhood cancer patients, the long-term consequences of medical therapy, including impaired fertility from gonadotoxic therapy, have become an important consideration in a child’s treatment plan. Given this concern, there is growing interest in fertility preservation (FP) consultation for high-risk patients, yet referral can be inconsistent even in centers with a FP program. This study aimed to assess practitioner perceptions surrounding families’ interest in FP and the desire of parents to discuss FP if their child was deemed to be at significant risk of infertility from their planned therapy.
Methods:
A survey was administered to parents of non-oncology patients and practitioners across all medical and surgical subspecialties. Parent surveys were administered in outpatient clinics; and practitioner surveys were distributed via email. Questions focused on demographics, family history and FP, specifically related to willingness to participate, cost and attitudes toward the consultation.
Results:
A total of 164 practitioners (95.9%) and 101 parents (96.2%) completed the full survey. Compared to practitioners, parents were younger (44 years vs. 37 years, p<0.001), non-white (79.5% vs. 51.4%, p<0.001), single parents (6.2% vs. 18.1%, p<0.001) and had a total household income less than $131,201 (11.8% vs. 68.6%, p<0.001). There was no difference between parents and practitioner’s perceived parent willingness to participate in FP (90.7% vs. 96.8%, p=0.07). Practitioners grossly overestimated the amount of distress having a FP discussion would cause parents (77.5% vs. 32.7%, p<0.001) and underestimated the parent’s feeling of hope provided by a FP discussion (67.1% vs. 84.7%, p<0.001). Practitioners significantly underestimated a parent’s willingness to pay for FP (median [IQR] $500 [200-1000] vs. $1000 [300-5000] per year, p=0.03). In consultation, practitioners incorrectly perceived that parents would want to learn about infertility risk from a third party fertility preservation consultant (62.6% vs. 39%, p<0.001), when in fact parents preferred discussion with their pediatrician (14.6% vs. 45.7%, p<0.001) or oncologist (73.1% vs. 64.8%, p=0.183).
Conclusion:
Parents feel less distress and more hope with an FP consultation than practitioners perceived. Moreover, they are willing to pay more for these services than presumed. These misperceptions could hinder referral for FP consultation and suggest that a standardized process for evaluating infertility risk may best serve patients and families.
