Survey of understanding and awareness of fertility preservation in pediatric patients: Is conversation about fertility preservation unpleasant for pediatric patients?

Abstract

Objective: To verify understanding and awareness of fertility preservation (FP) in pediatric patients undergoing FP treatments.

Methods: A questionnaire survey was conducted before and after explanation of fertility issues and FP treatments for patients 6-17 years old who visited or were hospitalized for the purpose of ovarian tissue cryopreservation (OTC) or oocyte cryopreservation (OC), or sperm cryopreservation between October 2018 and April 2022. This study was approved by the institutional review board at St. Marianna University School of Medicine (No. 4123, UMIN000046125).

Result: Participants in the study comprised 36 children (34 girls, 2 boys). Overall mean age was 13.3 ± 3.0 years. The underlying diseases were diverse, with leukemia in 14 patients (38.9%), brain tumor in 4 patients (11.1%). The questionnaire survey before the explanation showed that 19 patients (52.8%) wanted to have children in the future, but 15 (41.7%) were unsure of future wishes to raise children. And most children expressed some degree of understanding of the treatment being planned for the underlying disease (34, 94.4%). Similarly, most children understood that the treatment would affect their fertility (33, 91.7%). When asked if they would like to hear a story about how to become a mother or father after FP which including information of FP, half answered "Don't mind" (18, 50.0%). After being provided with information about FP treatment, all participants answered that they understood the adverse effects on fertility of treatments for the underlying disease. Regarding FP treatment, 32 children (88.9%) expressed understanding for FP and 26 (72.2%) wished to receive FP. "Fear" and "Pain" and "Costs" were frequently cited as concerns about FP. Following explanations, 33 children (91.7%) answered "Happy I heard the story" and no children answered, "Wish I hadn't heard the story". Finally, 28 of the 34 girls (82.4%) underwent OTC and one girl underwent OC.

Discussion: The fact that all patients responded positively to the explanations of FP treatment is very informative. This is considered largely attributable to the patients themselves being involved in the decision-making process for FP.

Conclusions: Explanations of FP for children appear valid if age-appropriate explanations are provided.

Keywords: children’s response to fertility preservation explanations; fertility preservation; oncofertility; oocyte cryopreservation; ovarian tissue cryopreservation; pediatric cancer.

Figure 1

Age distribution of participants in the present study. The peak age groups were 14–15 years and 16–17 years. Participants also included 11 prepubertal children ≤11 years old. The youngest participant was 6 years old.

Figure 2

Questionnaire results before FP explanation (pre-Q3, 4, and 6). About half of the affected children expressed hopes of becoming parents in the future, but some (especially young children) were unsure of their feelings about “wanting to become father or mother” (A: pre-Q3). In addition, some children (particularly among young children) did not understand the planned treatment (B: pre-Q4). On the other hand, children tended to gain an understanding of the effects of disease treatment on fertility and the reasons for their visit (C: pre-Q6). Of these 36 patients, 11 were <11 years old (Group A), 9 were 12–14 years old (Group B), and 16 were 15–17 years old (Group C).

Figure 3

Questionnaire results before FP explanation (pre-Q7, 8, and 9). Similar to pre-Q6, many children recognized the reasons for visiting our hospital (A: pre-Q7). However, not many children were enthusiastic about hearing a story about becoming a parent in the future, consistent with Q3 (B: pre-Q8). In addition, many children were aware of FP treatment, which was generally consistent with pre-Q6 and -Q7(C: pre-Q9). Of these 36 patients, 11 were <12 years old (Group A), 9 were 12–14 years old (Group B), and 16 were 15–17 years old (Group C).

Figure 4

Questionnaire results after FP explanation (post-Q1, 2, and 3). A certain degree of understanding was reported, and no patients reported no understanding at all of the effects of treatment on fertility or of FP treatment (A: post-Q1; B: post-Q2). In addition, two participants aged 15–17 answered that they did not want to undergo FP, but one (a boy) subsequently decided to undergo sperm cryopreservation. The other (a girl) did not meet the indications for FP (C: post-Q3). Of these 36 patients, 11 were <11 years old (Group A), 9 were 12–14 years old (Group B), and 16 were 15–17 years old (Group C).

Figure 5

Questionnaire results after FP explanation (post-Q5 and 8). Key concerns about FP involved fear and pain, followed by financial concerns. No age-related differences were seen in these results (A: post-Q5). After the explanation, all children showed a positive reaction. The results also included patients (5 girls) who did not receive FP and the patients (one girl and boy) who responded that they did not wish to undergo FP (B: post- Q8). Of these 36 patients, 11 were <11 years old (Group A), 9 were 12–14 years old (Group B), and 16 were 15–17 years old (Group C).