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Published on: October 20, 2010
Caregivers' perceptions of fluorescence-guided surgery (FGS) in pediatric oncology: a questionnaire-based study
Irene Paraboschi1,2, Ugo Maria Pierucci3, Michela Marinaro3
1Department of Biomedical and Clinical Science, University of Milano, Via Giovanni Battista Grassi 74, 20157, Milan, Italy. irene.paraboschi@hotmail.com.
Insights
Parents show strong support for fluorescence-guided surgery (FGS) in pediatric cancer, valuing innovation and clear communication. High trust and positive emotions underscore their engagement, with a need for detailed risk-benefit information for decision-making.
Area of Science:
- Pediatric Oncology
- Surgical Innovation
- Patient Engagement
Background:
- Parental perspectives are crucial for adopting new surgical technologies.
- Fluorescence-guided surgery (FGS) offers potential benefits in pediatric solid tumor treatment.
- Understanding caregiver attitudes is key to successful clinical translation.
Purpose of the Study:
- To quantitatively assess parental engagement with fluorescence-guided surgery (FGS) for pediatric solid tumors.
- To evaluate caregiver perceptions, decision-making attitudes, and emotional responses toward FGS.
- To identify parental information needs and concerns regarding FGS in pediatric cancer care.
Main Methods:
- A structured questionnaire was administered to 28 caregivers of children with Beckwith-Wiedemann syndrome.
- Assessed emotional responses (optimism, anxiety) and perceived medical team support using Likert scales.
- Explored awareness of FGS, perceived impact on outcomes, and information needs; data were analyzed descriptively and thematically.
Main Results:
- High parental trust (75%) and belief (86%) in FGS improving surgical safety and effectiveness.
- Predominantly positive emotional responses, with high confidence and optimism; low anxiety.
- Caregivers desired transparent risk-benefit information, despite limited prior FGS awareness (11%).
Conclusions:
- Parents exhibit high engagement and support for FGS in pediatric solid tumors.
- Transparent communication and shared decision-making are vital for FGS clinical translation.
- Active parent-patient involvement is essential for integrating FGS into pediatric cancer care.
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.

