Bridging the Gap in Neuroblastoma Care: Consensus‐Based Statements With Recommendations for Improved Patient and Caregiver Experiences
Vickie Buenger, Joseph Bauer, Jennifer Diamond, Maggie Fader, Shae Hansen, Jacqueline M. Kraveka, Johanna Schoen, Amber Shearer, Dena SherwoodABSTRACT
Neuroblastoma's complex, heterogeneous biology poses significant diagnostic and therapeutic challenges, often requiring caregivers to absorb complex information and participate in time‐sensitive decisions. However, caregivers often feel unprepared to evaluate options. A multidisciplinary panel developed consensus statements, informed by literature review and iterative discussion, to identify caregiver needs and communication priorities. Thirty statements across six domains emphasizing transparent communication, shared decision‐making, and recognizing evolving family goals achieved consensus (mean Likert score ≥4.0/5.0). Some statements provide recommendations outlining strategies to strengthen provider–caregiver communication and improve trust, equity, and decision quality in neuroblastoma care through provider education, communication frameworks, and family support resources.