A parental perspective concerning barriers to care for neural tube defects in China

BACKGROUND: The People's Republic of China (PRC) has the highest incidence of neural tube defects (NTDs) in the world. NTDs remain a significant contributor to the global burden of disease amendable to surgical care; however, no studies to date have evaluated the patients’ perspective regarding perceived barriers to care. METHODS: The study was conducted at the Shanghai Children's Medical Center (SCMC) between 6/11/2014 and 7/17/2014. Surveys were administered to families presenting to the clinic of the SCMC director for Pediatric Neurosurgery. Additionally, orphaned patients under the care of the Baobei Foundation were surveyed for comparison. Participants were allowed to mark as many barriers on the survey as they deemed relevant to their experience. RESULTS: A total of 69 patients were surveyed. The most frequently chosen barrier to care, with a P value < 10(-5), was that the referring physician did not know enough about the child's condition. As compared to the Baobei Foundation orphans, surveyed patients presented at an older age for initial treatment (7 months versus 1 month, P value = 0.001), and visited more hospitals before reaching SCMC (3.14 versus 1.0, P value < 10(-5)). CONCLUSIONS: The results of this study highlight the referring physician as a primary barrier to care. The younger age at time of treatment for Baobei orphans born with NTDs supports this finding, as they essentially bypassed the referral process. An elaboration on reasons for this real or perceived barrier may provide insight into a means for expedited diagnosis and treatment of NTDs within the PRC.