No abstract

Purpose Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e., 3 and 5 years post-diagnosis), examining the impact of CNS-directed treatment on child QoL, as well as sex and age at diagnosis as potential moderators. Methods Families of children with cancer (ages 5-17) were recruited at diagnosis or relapse (N = 336). Survivors completed the PedsQL at 3 (n = 96) and 5 years (n = 108), along with mothers (101 and 105, respectively) and fathers (45 and 53, respectively). The impact of CNS treatment, sex, and age at diagnosis on child QoL was examined over both time since diagnosis and time since last treatment using mixed model analyses. Results Parent-report of the child's total QoL was in the normative range and stable between 3 and 5 years when examining time since diagnosis, while child reported QoL improved over time (p = 0.04). In terms of time since last treatment, mother and child both reported the child's QoL improved over time (p = 0.0002 and p = 0.0006, respectively). Based on parentreport, males with CNS-directed treatment had lower total QoL than females and males who did not receive CNS-directed treatment. Age at diagnosis did not moderate the impact of treatment type on total QoL. Conclusions Quality of life (QoL) in early survivorship may be low among males who received CNS-directed treatment. However, this was only evident on parent-report. Interventions to improve child QoL should focus on male survivors who received CNS-directed treatment, as well as females regardless of treatment type.

Background: Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis.Methods: Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. Results: Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. Conclusions:This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population. K E Y W O R D Sadolescents and young adult males, cancer, fertility Childhood cancer survival rates exceed 80%, 1 but more than half of males experience infertility as a late effect of treatment. [2][3][4] Survivors often want biological children, and infertility may cause psychosocial distress and have a negative effect on intimate relationships and quality of life. 5-8 Thus, it is paramount to proactively address infertility risk and offer fertility preservation (FP) options before treatment. 9,10 Sperm banking is a safe and effective FP method available to pubertal males. 11 Although the increasing number of fertility programs Abbreviations: AYA, adolescent and young adult; FP, fertility preservation. has expanded FP access, 12-14 sperm banking rates remain under 40% at many pediatric cancer centers. 6,15 Older age, sexual experience, and provider recommendation increase the likelihood of sperm banking. 16,17 However, many adolescents and young adults (AYAs) advised to bank by their healthcare team still ultimately decline FP. 16 Fertility and sexual/reproductive health are sensitive topics, often difficult to discuss within families. 18,19 A recent study conducted immediately after the initiation of cancer treatment highlighted the importance of parent involvement in sperm banking decisions. 20However, AYAs and their parents may have discordant reproductive

Purpose: Approximately half of male childhood cancer survivors experience impaired fertility, which is known to cause psychological distress. Yet, less than 50% of at-risk adolescent and young adult (AYA) males pursue fertility preservation (FP) at diagnosis. Alternatives to biological parenthood (e.g., adoption/sperm donation) may be considered, but little is known about perspectives regarding these alternatives among AYA males and their families. Methods: Families of AYAs were recruited for a mixed-method study examining FP decisions at cancer diagnosis. One month later, 48 participants from 20 families (18 male AYAs, 12-22 years of age, 19 mothers, 11 fathers) completed semistructured interviews, including two questions about: (a) alternative routes to biological parenthood, and (b) their knowledge about the processes involved and/or challenges associated with such alternatives. Verbatim transcripts were coded for thematic content using the constant comparison method. Results: Three main themes were identified, of which two represent both ends of considering alternative parenthood: (a) Willingness to consider alternatives to biological parenthood, primarily adoption; (b) No consideration/discussion of alternative family building options; and (c) Variable knowledge of alternatives and/or associated challenges. Notably, more AYAs than parents mentioned a specific preference for biological children. Conclusions: One-month postcancer diagnosis, most parents reported willingness to consider alternatives to biological parenthood for their sons, while AYA males were less knowledgeable or open to these options. Future research should prospectively examine how these attitudes affect FP decisions before treatment. Medical and psychosocial providers should counsel patients and survivors accordingly to optimize reproductive outcomes and prevent psychosocial distress if parenthood goals are unfulfilled.