Early diagnosis and effective use of disease-modifying and curative therapies have resulted in $93% of youth with sickle cell disease (SCD) living into adulthood with less disease morbidity. 1 Consequently, reproductive health (including fertility, contraception, and preimplantation genetic testing) is an emerging area of importance in this population. [2][3][4][5] Specifically in males with SCD, fertility can be diminished by many factors, including priapism, anemia, hypogonadism, and testicular infarction from the disease and/ or antineoplastic treatments, such as hydroxyurea. 2 Long-standing and recent research shows that semen abnormalities occur in males with SCD across the life course, including studies that show impaired semen parameters at baseline in adult males, which further decline after starting hydroxyurea 6 ; abnormal semen parameters in adolescents and young adults (AYAs) irrespective of hydroxyurea treatment 7 ; and reduced spermatogonial cell counts in prepubertal boys who received hydroxyurea. 8 National organizations (eg, the American Academy of Pediatrics) are urging providers to counsel at-risk SCD patients to optimize reproductive outcomes. 9 Experts also recommend fertility testing (ie, semen analysis) in male AYAs with SCD, 10 yet specific guidelines have not been developed. There are limited data on male AYAs with SCD and their caregivers' perspectives on providing semen samples for testing. This information is critical, as AYAs with SCD may face multiple barriers to obtaining testing and to fertility-related decision-making. AYAs with SCD frequently have poor access to health care 11-13 that may limit their opportunities to learn about and obtain testing, compromise their understanding and use of fertility information, and prevent them from getting testing that is not covered under insurance laws in many states. 14 These factors may be particularly impactful as AYAs become increasingly independent, develop life goals, and transition to adult care where they will make their own treatment decisions. 15 In this context, a small pilot study approved by Nationwide Children's Hospital's Institutional Review Board was conducted to examine knowledge and perspectives on fertility testing among male AYAs (14-21 years) with SCD and caregivers of the participating males at a large, midwestern pediatric academic medical center. English-speaking patients were approached during clinic visits and excluded if they had a preexisting developmental or cognitive deficit that would preclude their ability to independently complete electronic surveys or if they had previously undergone hematopoietic stem cell transplantation. After informed consent (assent, if ,18 years of age) was obtained, participants completed the Fertility Knowledge and Attitudes Questionnaire (FKAQ), a survey developed by the research team. The FKAQ was based on constructs from the Health Belief Model (eg, perceived risk of infertility and benefits and barriers to fertility testing) and items from prior fertility-related studies among m...

Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high (M = 5.74–6.33 out of 7), with no significant differences between non-attempter (n = 15) and attempter (n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.

Background: Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision making in this population. This study explored FP communication among mothers, fathers, and their male adolescents newly diagnosed with cancer.Procedure: Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews 1-2 months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis. Results: Five process themes emerged: (1) reliance on health care team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with health care providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent's future partner's desire for Abbreviation: FP, fertility preservation.

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Fertility navigators (FNs) are important in communicating infertility risk and fertility preservation (FP) options to patients receiving gonadotoxic therapies. This retrospective study examined electronic medical records of patients with fertility consults at a large pediatric institution (2017-2019), before and after hiring a full-time FN. Of 738 patient encounters, 173 consults were performed pre-navigator and 565 postnavigator. Fertility consults for long-term follow-up cancer survivors increased most substantially: pre-navigator (n = 7) and post-navigator (n = 387). Across diagnoses, females had a larger increase in consults compared to males (χ 2 [3, N = 738] = 8.17, p < .05). Findings highlight FNs' impact on counseling rates, particularly in survivorship.