Introduction/Background: Neural Tube Defects (NTDs) are the most common congenital malformation. Its incidence in Guatemala is fifteen times higher than in the United States, where its prevalence is reduced through folic acid and abortion after prenatal diagnosis. Although there have been some efforts to prevent NTDs in Guatemala through fortification methods, NTDs still remain a healthcare concern and a large number of patients are not treated following ideal standards. Every form of NTD can be diagnosed immediately after birth through a standard physical exam. The aim of this study was to define the barriers to surgical care from the perspective of the parents. To the best of our knowledge, this study together with a similar one conducted by our group in the People’s Republic of China are the first of its kind.
Methods: This study was approved by UCLA IRB. It was conducted at the San Juan de Dios General Hospital, one of the largest public hospitals in the country and the only in Central America with a unit devoted to children with NTD. The study participants were either biology parents or family members of children presenting to the clinic for acute spina bifida treatment or for spina bifida outpatient follow up appointments between June 6 and July 14 of 2018. All surveys were administered by one of us (BP) in Spanish, in privacy after a proper parental or guardian consent was obtained. The participants were not paid for their participation and their participation or lack of it did not affect the quality or type of care that the children received at San Juan de Dios General Hospital. The questionnaire consisted of a list of preformed questions regarding socioeconomic status, education, questions about the gestation/delivery, and a list of preformed options to assess barriers as the family deemed relevant to their experience. The participants were able to refuse to answer any of the questions that they deemed too sensitive or intrusive.
Results: A total of 72 families with children at various stages of the treatment process were interviewed and all of them filled the questionnaire. The analysis yielded that the most common factor as related by the parents were; the lack of knowledge about the condition by the treating physician, lack of understanding of the condition by the parents. Not far behind but still not as relevant as the factors mentioned above the parents listed a set of economical modifiers.
Discussion: Our data suggests that understanding about etiology and treatment alternatives of congenital pathologies, even as frequent as NTD, are not part of the medical school curriculum. At the same time, the efforts for reducing the incidence of NTD through incorporating folic acid in the diet will not succeed as desired if the population does not have awareness about the disease. Finally, diseases that are prone to stigma are influenced by religious beliefs.