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.
Purpose: To qualitatively explore the content of fertility discussions between oncologists and their adolescent and young adult (AYA; 15–39 years) cancer patients from the perspective of oncologists at an NCI-designated comprehensive cancer center. Methods: We recruited oncologists of various specialties employed at an NCI-designated comprehensive cancer center in California who treat AYAs at risk for infertility. We collected demographics and fertility-related information (if they discuss fertility with AYA patients and level of confidence doing so) via REDCap prior to conducting a semi-structured interview via HIPAA-compliant Zoom. Audio files were transcribed verbatim and reviewed for themes using an inductive codebook thematic analysis approach. Results: Oncologists (n = 12) were female (66.7%), of White or Asian race (41.7% each), and were on average in practice for 14.3 years (SD = 6.7). All endorsed discussing fertility with AYAs and were on average somewhat/fairly confident doing so. The detail with which oncologists reported discussing fertility with AYAs varied substantially and only some reported discussing costs associated with fertility preservation. Oncologists also reported assorted information they always mention, mention on a case-by-case basis, avoid, or feel is not necessary when discussing fertility. Conclusion: This study provides a detailed description of information delivered by oncologists during fertility discussions to their AYA patients, revealing unstandardized oncofertility counseling. Fertility discussions were described to vary widely in depth and content, suggesting adherence to clinical practice guidelines limited. Interventions to increase provision of guideline-concordant counseling are needed to provide actionable pathways by which AYAs can proactively mitigate adverse reproductive health outcomes.
29 April 2022 in Journal of Clinical Psychology in Medical Settings
Background/Objectives: The Family‐centered Adolescent Sperm banking values clarification Tool (FAST) was developed to facilitate sperm banking communication and decision‐making pre‐cancer treatment. The FAST was tested in a pilot parallel randomized controlled trial (Fertility Preservation Discussions And Decisions: “FP‐DAD”‐NCT04268004), aiming to (i) assess feasibility/acceptability of FP‐DAD; and (ii) examine efficacy regarding banking attempts (yes/no) and decision quality. Differences in decision quality by banking attempt were explored.Design/Methods: Males (12–25 years, new cancer diagnosis) and caregivers were randomized to standard of care (fertility consult) or FP‐DAD (fertility consult + FAST + interventionist‐led discussion). One month later, FP‐DAD participants completed acceptability surveys. Both arms completed the Brief Subjective Decision Quality measure. Descriptive statistics, chi‐square, and independent samples t‐tests/mixed‐models examined relationships between variables.Results: Acceptability ratings of FP‐DAD were high (88%–100%). Recruitment and participation challenges limited the final sample size (21 adolescents and 32 caregivers). Banking attempts (67% in standard of care vs. 82% in FP‐DAD) did not differ by arm. While decision quality was not significantly different between groups, effect sizes were medium‐large for four of six items for adolescents (d = 0.6 to −0.90) and two of six for caregivers (d = 0.36 to −0.78). Decision quality was significantly higher across several domains among those who banked.Conclusions: FP‐DAD had high acceptability, though feasibility challenges (e.g., time contraints) limited full family participation. Findings showed limited efficacy, but effect sizes suggest this may be due to sample size. Relationships between banking attempts and decision quality emphasize banking benefits. Findings will inform adaptations to the FAST for clinical implementation.
Purpose: This study aims to explore the integration of American Society of Clinical Oncology (ASCO) guidelines for fertility discussion in clinical practice. Methods: A concurrent triangulation mixed methods design was used. We recruited oncologists from an NCI-designated Comprehensive Cancer Center who treat adolescents and young adults (AYAs) at risk for infertility to participate in a semi-structured qualitative interview and conducted a thematic analysis. Simultaneously, self-report fertility-related data were collected from AYAs (age 18-39) diagnosed at the same institution via self-report survey and were analyzed using descriptive statistics. Results: Themes reported by oncologists (N = 12; 66.7% female, on average in practice for 14.3 years) included a lack of oncofertility-related training and limited knowledge surrounding fertility discussion guidelines. Those who were aware of guidelines stated that they informed their discussions. Oncologists’ perceptions of fertility discussion guidelines were largely positive, though reservations were expressed. Discussions were primarily informed by patient needs and research/literature, but seldom by oncologists’ explicit training or experience in oncofertility. Among AYAs (N = 58; 53.5% female, 35.1% Hispanic, on average 32.0 years at diagnosis), 82.3% had a fertility discussion, 62.6% of which occurred with their oncologist. Fertility discussions occurred at some visits (66.7%), and AYAs were very (39.4%) or moderately (27.3%) satisfied with counseling received. Components of ASCO guidelines most often discussed were the timing of preservation and consideration of individual factors in fertility preservation (66.7% each). Patient advocacy resources (33.3%) and informing them that their cancer history does not increase risk of cancer or birth defects in a child (30.3%) were least often discussed. Conclusion: Awareness of fertility discussion guidelines among oncologists was low, and more than half of AYAs reported only two components of ASCO guidelines were included in fertility discussions with their oncologists. Despite this, AYAs’ overall satisfaction with discussions was moderate to high, suggesting adherence to all guideline components may not be necessary for AYAs to derive benefit. While oncologists reported largely positive perceptions of fertility discussion guidelines, several shared that the guidelines themselves may hinder implementation if they do not capture diverse patient scenarios and/or are outdated. Implications for Cancer Survivors: Findings suggest a need to improve oncologists’ knowledge surrounding guidelines, refine recommendations to optimize oncofertility counseling, and subsequently improve their integration in practice to ensure AYAs are provided with desired and actionable information to support goal-concordant reproductive decisions.
Introduction: Clinical practice organizations have developed evidence-based guidelines to structure oncofertility care delivery and mitigate fertility impairment after cancer. However, fertility care remains a leading unmet need for adolescents and young adults (AYAs) with cancer, and implementation of guidelines in practice is poorly understood. This study aims to identify intervention opportunities to improve the delivery of guideline-concordant oncofertility counseling for AYAs with cancer from the perspectives of oncologists. Methods: Oncologists who treat AYAs with cancer at risk for infertility at an NCI-designated Comprehensive Cancer Center in California were recruited to participate in a virtual, semi-structured qualitative interview. Opportunities for interventions were identified following a thematic analysis. Results: Data/thematic saturation was achieved through 12 interviews with oncologists (66.7% female, 41.7% White and 41.7% Asian, in practice for an average of 14.3 years). To increase delivery of guideline-concordant oncofertility counseling for AYAs with cancer, oncologists reported opportunities for: (1) enhancements to electronic care systems (e.g., reminders to discuss fertility with young patients, automatic referrals for fertility-related care, expedited oncofertility consults); (2) dedicated personnel and time (e.g., appointing a specific person to discuss fertility, allocating dedicated time to discuss fertility); and (3) oncologist education (e.g., related to financial considerations, fertility preservation, availability of oncofertility-related resources within the care setting, patient preferences and experiences). Discussion: This study identified oncologists’ perspectives on opportunities for interventions to improve guideline-concordant oncofertility counseling for AYAs with cancer, providing actionable insights into targets for change across both provider- and system-level domains. Notably, identified interventions depend upon institutional commitments to prioritize oncofertility. Without systemic efforts to improve care, oncofertility will likely remain a prominent unmet need for AYAs with cancer.