Routine fertility conversations linked to better childhood cancer care perceptions

Routine fertility discussions with parents of children receiving cancer treatment were associated with clearer information, better understanding of treatment-related infertility risk and more reports that fertility had been discussed at all at Vilnius University Hospital Santaros Klinikos in Lithuania. In a before-and-after study, 63.6% of surveyed parents after the program reported having an opportunity to discuss fertility, compared with 37.5% before it; 59.1% also said they felt knowledgeable about fertility-related treatment effects, compared with 32.1% previously. The findings point to a practical model for making oncofertility care more systematic, although the non-randomized comparison cannot establish that the program caused every difference observed.

The investigation examined how families perceived oncofertility care before and after the Lithuanian hospital introduced a formal fertility-informing procedure on 1 July 2022. During the earlier period, from 1 July 2021 to 1 July 2022, fertility appeared among the potential side effects listed in the general written consent form for cancer treatment. Any discussion of fertility with a pediatric oncologist was sporadic, unstructured and not consistently documented in the medical history, and children were not routinely triaged for a fertility discussion. Under the new procedure, a dedicated, trained physician discussed anticipated fertility impairment with every eligible family, provided individualized written material and invited questions. Families were told about both low and high gonadal-damage risk, rather than fertility information being reserved for children considered most vulnerable.

Researchers assessed the change with an oncofertility care evaluation questionnaire adapted and translated for the Lithuanian setting. Respondents rated statements on a five-point Likert scale, from “Completely disagree” to “Fully agree,” covering topics such as opportunities to discuss fertility, clarity of information, supportive material, remaining questions and awareness of treatment effects. The questionnaire incorporated adapted questions from validated adult instruments, including the Decision Regret Scale, Decisional Conflict Scale, Dutch Reproductive Concern Scale and Patient-Centeredness Questionnaire–Infertility, and added items suited to pediatric oncology. To gauge knowledge of infertility risk, parents estimated whether their child had low or high risk. The study team then classified each case with a gonadal-damage risk tool based on treatment exposures, including cyclophosphamide-equivalent dose, abdominal or testicular radiotherapy, ovarian surgery and other interventions.

Before implementation, 120 parents or guardians were invited and 56 participated, a response rate of 46.7%. After implementation, 66 caregivers of newly diagnosed patients completed the questionnaire, a 66% response rate among those invited. Among the later group, 42 of 66 respondents, or 63.6%, said they had had an opportunity to discuss fertility with healthcare personnel, compared with 21 of 56, or 37.5%, in the earlier group. The difference was statistically significant at p = 0.002. Receipt of supportive fertility material rose from 6 of 56 respondents, or 10.7%, to 28 of 66, or 42.4% (p = 0.003), while the proportion who said they still had fertility questions after speaking with the pediatric oncologist fell from 42.9% to 24.2% (p = 0.003). The study also recorded fewer reports of no fertility discussion: 13 of 56 respondents, or 23.2%, said fertility had not been discussed at all before implementation, compared with 12 of 66, or 18.2%, afterward.

Awareness of treatment-related effects also differed between the two periods. Before routine informing, 18 of 56 respondents, or 32.1%, felt knowledgeable about the effects of treatment on fertility; afterward, 39 of 66, or 59.1%, did so (p = 0.001). Parents recognizing that fertility-preservation options existed increased from 32.1% to 60.6% (p = 0.001). A greater share also said the pediatric oncologist had mentioned possible fertility impairment, rising from 44.6% to 59.1% (p = 0.04). The proportion agreeing or fully agreeing that fertility information was understandable and clear increased from 46.5% to 62.1% (p = 0.03). These findings concern caregivers’ perceptions and reported experiences, not direct measurements of fertility preservation uptake, later reproductive function or long-term reproductive outcomes.

The clearest change involved parental estimation of the child’s risk. In the earlier group, five parents of children with low gonadal-damage risk and five parents of children with high risk selected the correct category. After implementation, 30 of 47 parents of low-risk children, or 63.8%, estimated low risk correctly, while 12 of 19 parents of high-risk children, or 63.2%, correctly identified high risk. The overall figures reported in the study abstract rose from 15.2% to 63.6%. No parent in the later group incorrectly considered a high-risk child’s risk to be low. Nevertheless, 15 of 47 parents of low-risk children, or 31.9%, and 7 of 19 parents of high-risk children, or 36.8%, still said they did not know the risk after education, showing that a single conversation did not resolve uncertainty for every family.

The two groups were similar in several basic characteristics, although they were not identical. Median age at diagnosis was six years in both cohorts, and the distribution of boys and girls did not differ significantly. The proportion classified as high risk was 33.9% before implementation and 28.8% afterward, also not a significant difference. Acute lymphoblastic leukemia was the most common diagnosis in both groups, although the later cohort contained more hematologic malignancies and fewer solid tumors, a difference attributed in part to how patients were identified and invited. Surveys were also completed sooner after diagnosis in the later group: a median of three months rather than 19 months, with p less than 0.001. Respondents were also more likely to participate after implementation, 66% compared with 46.7%, a difference that may reflect stronger engagement with the care process and could influence the comparison.

Memory and communication barriers remained. Twelve of the 66 later respondents, 18.2%, said fertility had not been discussed despite the documented program, suggesting that some caregivers may forget information delivered during a stressful period. Parents also identified timing as important. In both cohorts, most respondents who answered an open-ended question favored a conversation before or early in treatment rather than after treatment; some preferred repeated discussion. Seven families whose children had acute lymphoblastic leukemia received two rounds of information: general guidance at the start of therapy, when the complete regimen was not yet known, and individualized risk information once induction was established. All four questionnaire respondents from this group correctly classified their child’s risk as low. These observations describe parental preferences and reported recall, not a test of whether repeated informing improves clinical outcomes.

The study also exposes an important limitation in the care pathway itself. Fertility informing and specialist counseling were treated as distinct activities. Families received risk education regardless of expected infertility risk, while referral for discussion of preservation options was intended mainly for high-risk children where infrastructure allowed. At the time, girls at the Lithuanian center did not have access to ovarian-tissue preservation, and pubertal boys who were referred directly for semen-preservation counseling were excluded from the analysis because they did not receive the routine informing process being evaluated. Thus, the study assessed the quality and perceived reach of information, not whether families ultimately obtained fertility preservation. It involved a modest, single-center sample and was not designed as a randomized trial, although the 103 eligible children represented roughly two annual populations of new pediatric cancer diagnoses at the center.

Taken together, the observations support routine, early and documented fertility communication as part of standard childhood cancer care, but they do not establish that the new procedure alone caused every improvement. The authors noted that families receiving structured information were more willing to participate in evaluation, which may itself reflect greater engagement and could influence the results. They also acknowledged that fertility risk can change with relapse or evolving treatment, yet the infrastructure for repeated triage and re-education was not yet in place. Nevertheless, the shift from general consent language to a dedicated conversation, individualized risk explanation and written support was associated with better parental understanding, fewer unresolved questions and more reports that fertility had been discussed at all—an important foundation for future multidisciplinary counseling and timely fertility-preservation referral.

Subject of Research: Evaluation of routine fertility informing and risk triage for families of children receiving cancer treatment

Article Title: Parents’ perception of enhanced oncofertility care in childhood cancer patients following routine fertility informing

Article References: Stukaite-Ruibiene, E., Clasen, N. H. Z., van den Heuvel-Eibrink, M. M., & Rascon, J. (2026). Parents’ perception of enhanced oncofertility care in childhood cancer patients following routine fertility informing. Frontiers in Pediatrics, 14, Article 1925381. https://doi.org/10.3389/fped.2026.1925381

Image Credits: AI Generated

DOI: 10.3389/fped.2026.1925381

Keywords: childhood cancer, oncofertility, fertility informing, treatment-related infertility, gonadal damage, pediatric oncology, parental perceptions, risk stratification, fertility preservation, late effects, Parents, perception