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

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.