ID #965 Pediatric Low-Grade Glioma (pLGG) Caregiver–Provider Communication Challenges and Opportunities
Kelli Wright, Elizabeth Testa, Stacia Wagner, Brittany Taylor, Rivkah Block, Tom DavidsonAbstract
Background
Pediatric low-grade gliomas (pLGG) are slow-growing and rarely life-threatening, yet they often cause significant morbidity and life challenges. Caregivers rely heavily on physician guidance to navigate their child’s diagnosis and treatment. This study surveyed caregivers about communication with their child’s diagnosing provider.
Objective
To identify and describe provider–caregiver communication strengths, challenges, and opportunities for improvements reported by caregivers of patients aged 5 to 39 years living with pLGG.
Methods
Caregivers were invited by advocacy organizations and fellow caregivers to complete an online survey to assess caregivers’ understanding of physicians’ explanations of the diagnosis, communication and language used.
Results
Caregivers who responded (n = 48) were predominantly white (82%) mothers (88%) aged 35–54 years (91%). Most pLGG diagnoses were made by pediatric neuro-oncologists (53%) or neurosurgeons (35%). Several communication features were deemed very or somewhat helpful and experienced by many; other features were experienced by fewer respondents who indicated they would have been very or somewhat helpful: discussion of long-term plan (32% not experienced), resources for support and education (26% not experienced), clear next steps (13% not experienced). Most commonly used disease-related terms by providers from a list provided were ‘slow-growing’ (78%) and ‘tumor’ (87%), which caregivers reported as well-explained. Other terms were used less commonly and reported as less well explained, including ‘malignant,’ ‘cancer,’ ‘chronic,’ ‘stable,’ ‘non-aggressive,’ and ‘shrinkage.’ Most caregivers (63%) found providers’ explanations of future expectations unclear. Consequently, caregivers sought this information independently (77%). Three areas of knowledge and communication yielded fair or poor ratings, including provider knowledge of disease (27%), knowledge of treatment options (33%), and making caregivers feel part of the team (27%).
Conclusion
This survey identified both effective and suboptimal aspects of provider–caregiver communication during pLGG diagnosis and treatment decision-making, highlighting opportunities to improve communication, strengthen trust, and increase caregiver confidence and preparedness.