Can ChatGPT provide reliable guidance to families of children with Duchenne Muscular Dystrophy? A dual perspective of parents and experts

BACKGROUND: Artificial intelligence (AI)-driven chatbots, such as ChatGPT, have the potential to improve healthcare communication by providing timely and accessible medical information. Duchenne Muscular Dystrophy (DMD) is a progressive neuromuscular disorder that significantly impacts patients and their families. Parents of DMD patients seek reliable information on disease progression, complications, and care management. However, the effectiveness of AI-generated medical guidance remains unclear. METHODS: This study evaluated ChatGPT's capacity to provide guidance to DMD patients' families by analyzing expert and parental assessments. Ten frequently asked questions were compiled from parental inquiries and submitted to ChatGPT-4o. Responses were evaluated by physiatrists, pediatric neurologists, and parents using structured rubrics. Experts rated responses based on Accuracy, Currency, Comprehensiveness, Usefulness, and Understandability, while parents assessed them in terms of Satisfaction, Empathy, Comprehensiveness, and Understandability. RESULTS: Experts rated Accuracy highest (4.3 ± 0.6; 91.8% of ratings ≥ 4), followed by Usefulness (4.2 ± 0.6; 88.6%), Currency (4.2 ± 0.7; 87.1%), Comprehensiveness (4.2 ± 0.7; 85.1%), and Understandability (4.2 ± 0.7; 83.4%). Parents rated Understandability highest (4.5 ± 0.8; 86.0%), followed by Comprehensiveness (4.4 ± 0.8; 84.0%) and Satisfaction (4.4 ± 0.8; 83.8%). Empathy received the lowest parental score (4.2 ± 0.9; 75.1%). Although both groups generally evaluated the responses favorably (median scores ≥ 4), experts tended to prioritize technical accuracy, whereas parents placed greater emphasis on clarity and practical usefulness. CONCLUSION: ChatGPT shows promise as an informational tool for parents of DMD, particularly in providing accurate and applicable medical guidance. However, limitations in empathy suggest a need for refinement. While ChatGPT should complement rather than replace human expertise, future improvements could expand its role in patient education and public health. Further research is needed to optimize AI-driven healthcare communication for reliability and ethical considerations.