As reported on GlobeNewswire, a newly published set of expert consensus recommendations is seeking to improve the care experience for children diagnosed with neuroblastoma and the families who support them. The guidance, published in Pediatric Blood & Cancer, outlines strategies to enhance communication, transparency, and shared decision-making throughout the patient journey.
Neuroblastoma is a rare pediatric cancer that most commonly affects infants and young children. Because treatment decisions often must be made quickly after diagnosis and can involve complex medical information, many parents and caregivers report feeling overwhelmed and insufficiently prepared to evaluate available options. Experts involved in the initiative noted that gaps in communication and education can contribute to confusion, emotional distress, and reduced confidence in the healthcare process.
To address these challenges, a multidisciplinary group of specialists and advocates developed the publication, titled “Bridging the Gap: Establishing Consensus for Improving Neuroblastoma Diagnosis and Care Experiences for Patients and Caregivers.” The effort was supported by SERB Pharmaceuticals and brought together neuroblastoma clinicians, allied health professionals, an ethicist, and caregiver representatives.
The panel conducted a review of existing evidence and engaged in multiple rounds of discussion before reaching agreement on 30 recommendations designed to improve interactions between care teams and families. The statements are organized into six key areas: critical clinical encounters, educational needs, treatment planning and goals, ethical considerations, health equity, and communication between providers, patients, and caregivers.
According to the authors, the recommendations are intended to establish clearer expectations for families while encouraging a more collaborative approach to treatment planning. The framework emphasizes the importance of ensuring caregivers receive understandable information, have opportunities to ask questions, and are supported as active participants in decisions affecting their child’s care.
Marcie Reeder, Senior Director of Patient Advocacy & Communications at SERB Pharmaceuticals, described the publication as an important step forward for the neuroblastoma community, noting that the recommendations can help families become more engaged throughout the treatment process.
Lead author Vickie Buenger, President Emeritus of the Coalition Against Childhood Cancer, highlighted the emotional and practical challenges families face following a high-risk neuroblastoma diagnosis. She said the consensus guidance was developed to help caregivers navigate difficult treatment choices with greater confidence by promoting open communication and stronger partnerships between families and healthcare teams.
The initiative originated from discussions within the Neuroblastoma Advocate Advisory Council, which identified several unmet needs among patients and caregivers. These included limited support for participation in treatment decisions, insufficient awareness of peer-support resources, and inadequate information about available therapies and clinical trial opportunities.
Researchers and advocates involved in the project plan to share additional findings at future scientific and rare disease meetings, including the NORD Rare Diseases & Orphan Breakthrough Summit and the Advances in Neuroblastoma Research conference.
The full consensus recommendations and additional information about the Bridging the Gap Neuroblastoma program are available through the initiative’s dedicated website.
