Satisfaction with Fertility Preservation Decisions among Adolescent Males with Cancer: A Mixed Methods Study

Abstract

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.

Study protocol for fertility preservation discussions and decisions: A family-centered psychoeducational intervention for male adolescents and emerging adults newly diagnosed with cancer and their families

“…Our previous research shows many families are open to communicating about FP decisions, but require guidance in facilitating these conversations [37]. Additionally, higher levels of family concordance on fertility perspectives is associated with increased FP utilization and improved decisional quality [36][37][38]. These findings and theoretical models, such as the Health Belief Model and Family Systems theory, have been instrumental in informing novel interventions to facilitate FP decision-making in pediatric oncology.…”

“…The Family Systems Theory posits that individuals are connected to their family context, and each family member exerts an influence on each other’s behavior [ 43 , 44 ]. Thus, when AEAs make decisions about FP, the influence of the family must be considered in order to optimize decision-making [ 37 , 41 , 43 , 44 ]. The intervention addresses the importance of family-centered communication by prompting parents to reflect on their own FP knowledge and perspectives, as well as their son’s perspectives.…”

“…The intervention incorporates techniques from motivational interviewing, which has shown to be a useful tool in healthcare decision-making [ 37 , 45 , 46 ]. These techniques include rapport-building with the AEA and their parents, actively listening to their perspectives about FP, and outlining perceived benefits of FP to families.…”

“…AEAs with cancer face additional barriers regarding FP decision-making, including emotional exhaustion [51], feeling sick and disengaged in conversation, or feeling a sense of embarrassment around the topic of infertility [52]. Our previous research shows many families are open to communicating about FP decisions, but require guidance in facilitating these conversations [37]. Additionally, higher levels of family concordance on fertility perspectives is associated with increased FP utilization and improved decisional quality [36][37][38].…”

“…Further, when parents were concordant with their son’s fertility values and goals, AEAs were more likely to attempt FP [ 36 ]. One month after the FP decision, both FP attempters and non-attempters expressed short-term satisfaction with their decision, but FP non-attempters expressed the potential for future regret about the decision not to use FP [ 37 ].…”