Status of the neonatal follow-up system in China: survey and analysis

BACKGROUND: There is little information about neonatal follow-up programs (NFUPs) in China. This study aimed to conduct a survey of hospitals participating in the Chinese Neonatal Network (CHNN) to determine the status of NFUPs, including resources available, criteria for enrollment, neurodevelopmental assessments, and duration of follow-up. METHODS: We conducted a descriptive study using an online survey of all 72 hospitals participating in CHNN in 2020. The survey included 15 questions that were developed based on the current literature and investigators’ knowledge about follow-up practices in China. RESULTS: Sixty-four (89%) of the 72 hospitals responded to the survey, with an even distribution of children’s (31%), maternity (33%) and general (36%) hospitals. All but one (98%) hospital had NFUPs, with 44 (70%) being established after 2010. Eligibility criteria for follow-up were variable, but common criteria included very preterm infants < 32 weeks or < 2000 g birth weight (100%), small for gestational age (97%), hypoxic ischemic encephalopathy (98%) and postsurgery (90%). The average follow-up rate was 70% (range: 7.5%–100%). Only 12% of hospitals followed up with patients for more than 24 months. There was significant variation in neurodevelopmental assessments, follow-up schedule, composition of staff, and clinic facilities and resources. None of the staff had received formal training, and only four hospitals had sent staff to foreign hospitals as observers. CONCLUSIONS: There is significant variation in eligibility criteria, duration of follow-up, types of assessments, staffing, training and facilities available. Coordination and standardization are urgently needed. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12519-023-00742-6.