Caregivers’ perceptions of fluorescence-guided surgery (FGS) in pediatric oncology: a questionnaire-based study

Abstract Aim To quantitatively assess parental engagement, perceptions, and decision-making attitudes toward fluorescence-guided surgery (FGS) in pediatric solid tumors. Methods A structured questionnaire was administered to caregivers of children with Beckwith–Wiedemann syndrome in collaboration with the “Associazione Italiana Sindrome di Beckwith–Wiedemann”, facilitating outreach to families within the national support network. Emotional responses (optimism, hope, confidence, anxiety, worry, and uncertainty) and perceived support were assessed using 5-point Likert scales (1 = not at all, 5 = extremely). The survey also explored prior awareness of FGS, perceived impact on surgical outcomes and recurrence risk, openness to clinical trial enrollment, concerns, and information needs. Data were analyzed descriptively; open-ended responses were thematically coded. Results Twenty-eight caregivers completed the survey. 86% of children had undergone tumor resection, predominantly for nephroblastoma (85%). Preoperative counseling was considered clear by 79% of caregivers, and perceived support from the medical team was high, with 68% reporting the maximum Likert score (5/5). Prior awareness of FGS was limited (11%); however, after explanation, acceptance was strong. Trust in surgical innovation was high (75% reporting maximum confidence), and 86% believed FGS could improve surgical safety and effectiveness. All respondents reported increased reassurance from the availability of technological support, and 71% perceived a potential reduction in recurrence risk. Emotional responses were predominantly positive, with high levels of confidence, hope, and optimism (75% maximum score), while anxiety, worry, and uncertainty were generally low. Qualitative analysis identified 3 main themes: strong trust and reassurance toward innovation, safety-related concerns focused on toxicity and long-term effects, and a clear need for transparent, detailed risk–benefit information prior to decision-making and potential clinical trial enrollment. Conclusions Parents demonstrate high engagement and strong support for FGS, emphasizing the importance of transparent communication, shared decision-making, and active parent–patient involvement to facilitate clinical translation.