A pressing issue for those concerned with Global Health is identifying barriers to pediatric surgical care. It is assumed that economic circumstances play a significant role. Nonetheless, most of the data has been acquired through epidemiological studies that did not factor the opinion of the parents. In order to incorporate the perception of the parents into the discussion, we conducted a study in which the parents expanded on the reasons that they felt were responsible for delayed treatment of their children. We choose to inquire about children born with neural tube defects (NTD) because this is a condition that is diagnosed at birth by simple physical examination. In great majority of the cases the standard of care requires surgical correction within 24-48 hours after birth or at least a set of tests that will determine the best opportunity for treatment. We choose to conduct our research at the Shanghai Children’s Medical Center (SCMC) because China has a high incidence of NTD (8/1000 live births), and there is a robust healthcare system with adequate facilities for caring for complex cases.
The study was approved by the UCLA Institutional Review Board and conducted at the SCMC in Shanghai, China between 6/5/18 and 7/12/18. We designed a questionnaire that examined Chinese parents’ perceived barriers to care. The questionnaire was in Mandarin and administered in to parents of patients presenting to the clinic of SCMC Director of Pediatric Neurosurgery. Demographic information was collected as part of the questionnaire, and participants were allowed to select as many barriers as they deemed appropriate to their experience seeking care for their children with NTD.
72 families were recruited to participate and all of them answered the questionnaire. The most frequently chosen barriers to care were: 1. lack of local health professionals or health facilities, 2. physician not knowing enough about the child’s condition, and 3. fear of the treatment and the side-effects of the treatment on the child. The patients are from 12 different provinces in addition to the city of Shanghai. 48 families reported that they have sought treatments for their children at at least one other hospital before arriving at SCMC.
Contrary to the popular belief that the problem of providing uniform excellent health care is the lack of economic resources, the actual main problem is the lack of knowledge of both the patients and doctors. When doctors are not able to interpret test results, they cannot give quality information to their patients, thus the patients cannot make informed decisions about their health. Studies have shown that both patients and doctors are “risk illiterate,” meaning that they are unable to see the difference between actual risk and relative risk. Our findings suggest that the lack of knowledge by the physician about NTD need to be factored when eliminating barriers to care for these patients. Doctors need to able to implement preventative measures before pregnancy, accurately diagnose NTD, and appropriately refer the patients if the local hospital cannot provide the proper treatments. Our findings also show that many parents are concerned about the treatments and the side-effects of the treatment on the child. This suggest that patients and their caregivers need to gain knowledge about NTD and the means of treatments. Our study result calls for more resources to help both doctors and patients to gain knowledge so that the patients can make informed decisions about their health and treatments. Eventually, it is reasonable to propose that what we have observed with regards to children with NTD can be extrapolated to other surgical conditions.