Insurance Status as a Sociodemographic Risk Factor for Functional Outcomes and Health-related Quality of Life Among Youth With Sickle Cell Disease

Racial and ethnic minority children access medical care significantly less than do white children, and1 African American children have higher rates of disability, primarily due to issues related to poverty as compared with white children.2 The impact of sociodemographic factors on health outcomes has been well documented in adults with chronic health conditions.3 The effect of these disparities on health outcomes is less clear for children with chronic health conditions, such as sickle cell disease (SCD), who rely on caregivers to access appropriate health care services. Social ecological factors, such as poverty level, neighborhood violence, and household structure, have been associated with poorer health outcomes in a national sample of children with SCD.4 SCD is a group of inherited red blood cell/hematological disorders in which the sickle hemoglobin predominates. The incidence of SCD in the United States is 1 in every 400 to 500 live births for the African American population in which SCD is most prevalent. The vast majority of SCD symptoms are managed at home; however, the condition is chronic and treatments involve routine administration of analgesic medication during outpatient visits or hospitalizations, prophylactic antibiotics to reduce susceptibility to infections, and folic acid supplementation to support red cell production.5 Symptom complications are unpredictable and recurrent, including episodes of severe pain, pneumococcal infections, anemia, nocturnal enuresis, stunted growth, and strokes.6,7 Although symptom severity varies across SCD genotypes, the chronic nature of SCD presents major challenges throughout development, which present significant disruptions in the child’s daily routine (eg, activity limitations, sleep disruptions, and reduced functional ability).6,8 Research has indicated that children with SCD have poor quality of life (QoL)9 and functional impairment among youth with SCD is rated in the moderate to high level.10 The presence and intensity of SCD pain was significantly correlated with functional impairment.11,12 The added burden of neighborhood distress (poverty, crime, insufficient community resources) and/or insurance access for health care utilization in this vulnerable group has not been fully explored. Although significant contributions from neighborhood influences (crime/violence, access to critical resources) and contextual factors (female-headed household, unemployment/underemployment) have been reported to negatively impact health outcomes,13 the lack of health insurance coverage is the single most important factor in the ability of minorities to access medical care.14,15 For example, before enrollment in a state-funded children’s health insurance program (SCHIP, New York), African American children had significantly greater levels of unmet needs (delayed and foregone preventive, acute, specialty, emergency care, and prescriptions) relative to white children (38% vs. 27% respectively). These differential effects were eliminated when children were enrolled in the SCHIP, with unmet needs at 19% for both groups postenrollment.16 Thus, insurance coverage may significantly impact access to health care, and access to appropriate health care management, among African American children. Notably within some chronic health conditions (ie, asthma, diabetes, traumatic brain injury), African American children tend to experience greater health difficulties than white children.17 Larson et al18 reported that the percentage of children in poorer health increased with the number of social risk factors they were exposed to across the course of the illness; specifically, maternal mental health difficulties, race/ethnicity disparities, and lack of medical insurance. Earlier research with SCD patients advocated for inclusion of both the social and cultural context of SCD to better understand sociodemographic factors that shape the disease experience and impact the patient’s response to the disease process.8,11,12,19 For example, low-income children with SCD were 4 times more likely than other African American children to be in fair or poor health.20 However, questions remain about how to best capture sociodemographic risks while measuring health disparity rates among minority children. Estimates of neighborhood social risk factors using Census tract data for the family’s zip code have been shown to be a reliable source for sociodemographic information relative to the associations between neighborhood distress (eg, high male unemployment rate, caregiver underemployment and/or low education, single parent homes, and poverty rate for neighborhoods defined by zip code) and health outcomes. 10,21,22 Palermo et al10 examined the relationship between sociodemographic factors, functional disability, and QoL for children and adolescents with SCD and their caregivers. Lower parent education and income were significant predictors of child functional disability and QoL (both physical and psychosocial), whereas neighborhood distress indicated by Census tract data only predicted physical health-related QoL. These results suggest that individual and family factors may be more relevant to functional outcomes and QoL in children with SCD, with neighborhood distress contributing to these outcomes in a smaller independent manner. With insurance type as a gateway to access medical care, health care utilization costs have the potential to negatively impact health promotion activities for patients who have restricted/limited medical coverage.18,23 In 1 report of statewide insurance coverage, children with SCD incurred medical expenditures that were 6 to 11 times higher than those of children without SCD.24 Examination of the effects of insurance type on health care utilization activities for children with SCD will help to evaluate equity in health care delivery for this population. Using a social ecological framework25 to describe potential risk factors for health outcomes, the current study examined sociodemographic factors for poor functional outcomes and QoL for children with SCD. After the findings of Palermo and colleagues that described the role of neighborhood distress on psychosocial outcomes among patients with SCD, we expected significant associations between both individual socioeconomic distress and neighborhood distress with functional disability and QoL.10 Namely, the current study examined the contributions of both individual (parent education, family income) and neighborhood (household structure, male unemployment) sociodemographic indicators, based on family zip code to access Census tract data, on several health outcomes (functional disability, QoL).25 Using insurance type (public vs. private insurance) and neighborhood indicators of sociodemographic distress (based on family zip codes to access Census tract data), associations among SCD complications, health care utilization (from medical chart reviews), parent reports of child QoL, and functional outcomes were examined. It was hypothesized that children with SCD with public insurance and children from more distressed neighborhoods would have higher functional disability and poorer QoL. The relative contribution of insurance status and neighborhood risk to QoL was also investigated.