Language and Latino immigrants living with spina bifida: Social determinants of health – the missing dimension in quality of life research

Abstract

PURPOSE: Aware of the higher birth prevalence of spina bifida (SB) among Hispanics/Latinos, we aimed to appraise the literature as it relates to cultural context through a review of quality of life (QOL) studies conducted among individuals with SB in order to improve care among immigrant families. METHODS: A systematic review was conducted consistent with the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. The inclusion criteria were: (1) children and adolescents (5-21 years of age) with SB and/or myelomeningocele; (2) quantitative studies; (3) health-related QOL outcome measured by validated instrument determinants; and (4) US-based studies. Articles meeting inclusion criteria were assessed using the focused conceptual framework informing the study (i.e., social determinants of health). RESULTS: Eighteen studies met inclusion criteria, with eight different QOL instruments represented. The majority of studies used generic assessments of QOL (72%), two reported the use of both a generic and a SB-specific QOL measure (11%), and three (17%) documented QOL utilizing a SB-specific validated instrument. Only seven (39%) of the studies stated that they included Hispanics/Latinos and only six (33%) reported including Spanish-speaking individuals. CONCLUSIONS: QOL in individuals with SB is mediated by a wide-range of interrelated factors. In order to better serve this vulnerable population as they transition across the lifespan, multilingual condition-specific QOL measures need to be further developed and implemented among Hispanic/Latino individuals with SB, especially those who are recent immigrants.

Neonatal ten-year retrospective study on neural tube defects in a second level University Hospital

“…Most NTDs are sporadic and multifactorial: an oligogenic/polygenic inheritance (genes regulating folate and methionine metabolism, and others involved in planar cell polarity signaling pathway) interact with influencing environmental factors [4,5,13]. Risk factors include: maternal folate deficiency, diabetes, obesity, exposure to teratogens (valproic acid and carbamazepine, lead and tetrachloroethylene-contaminated drinking water, arsenic, pesticides, mycotoxins, fungus contaminants of maize, heat, influenza virus), specific parental occupations and low socioeconomic status [4,14]. Recurrence risk of a second affected child is increased by 3-5 folds for couples with one sick infant, compared to the general population.…”

A systematic review of the experiences of minority language users in health and social care research

“…The included papers under the sub-theme of ‘Minority participation in health care’ (Kale and Syed, 2010; Angus et al ., 2013; Claydon-Platt, Manias and Dunning, 2013; Wang and Kwak, 2015; Castillo et al ., 2019; Wang et al ., 2019; Tatari et al ., 2020) were published between 2010 and 2020. These were a combination of reviews, mixed methods studies, qualitative studies, and a cross-sectional study.…”

Open Neural Tube Defects: A Case Presentation of 30-year-old Secundigravida with Spina Bifida of the Fetus

“…This marker is the fourth ventricle, considered as Intracranial Translucency (IT) between 11 and 13 + 6 weeks of gestation. Lack of IT has been identified as a marker for spina bifida [16,24,25].…”

“…The risk for recurrence in subsequent pregnancies is 3-8% increased [14]. In about 10% an open defect is associated with chromosomal abnormalities (mainly trisomy 18), single mutant genes, maternal diabetes mellitus, hyperthermia in early pregnancy [10], antiepileptic drugs intake (valproic acid, carbamazepine) [15], arsenic, pesticides, mycotoxins, influenza virus, [16] iodine, iron, and vitamin B12 deficiency [17,18].…”