Decoding the NICU: Readability study using LLM-powered NICU progress summaries for families

Background: Neonatal intensive care unit (NICU) progress notes contain complex medical terminology that many parents struggle to understand, particularly those with limited health literacy. This communication barrier can impede parental involvement in care decisions and increase physician time spent explaining medical concepts, potentially contributing to healthcare disparities.

Objectives: To evaluate large language models in translating complex NICU notes into clinically accurate 8th grade reading level plain language summaries to improve parent understanding and reduce physician documentation.

Design/Methods: We created 100 simulated daily progress notes documenting common neonatal complications in infants born between 22-41weeks of gestation using large language models (LLMs) including Claude and ChatGPT. Medical accuracy was verified through validation of 20% of the notes by two board-certified neonatologists. These validated notes were then processed through the same LLMs to generate Plain Language Accessible Note Summaries (PLANS) written at an 8th-grade reading level. The resulting summaries were evaluated using a standardized readability assessment, the Flesch-Kinkaid Grading level, to ensure accessibility.

Results: All PLANS achieved the target 8th-grade readability level, representing a significant improvement from the original technical documentation. Neonatologist review confirmed that the summaries maintained clinical accuracy while effectively translating medical terminology into accessible language. Preliminary physician feedback indicated that implementing PLANS could reduce time spent on parent education while improving communication efficiency.

Conclusions: This study demonstrates that LLMs can effectively translate complex NICU documentation into parent-friendly summaries without compromising medical accuracy. By providing equitable access to understandable medical information, PLANS have the potential to improve parental engagement, reduce physician documentation burden, and deliver higher-value care to all families regardless of health literacy level. Further research is needed to assess the impact of PLANS implementation on clinical outcomes and family satisfaction in real-world NICU settings.