Sickle cell disease and social determinants of health: A scoping review

Khan, Hamda; Krull, Mathew; Hankins, Jane S.; Wang, Winfred C.; Porter, Jerlym S.

doi:10.1002/pbc.30089

Cited by 22 publications

(27 citation statements)

References 82 publications

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“… 1 12 The current literature also suggests that children with SCD predominantly belong to families of lower socioeconomic status (SES) and parents with lower educational attainment, 12 a social determinant of health (SDoH). 13 Furthermore, studies have shown considerably higher healthcare usage among children with SCD from low SES families, whose SES status directly affects the timeliness and quality of treatment. 12 Additional documented barriers to care include lack of access to healthcare facilities, lack of knowledge about SCD, limited SCD management options; or denial of care by specialised health facilities due to having a healthcare plan with lower reimbursement rates.…”

Section: Introductionmentioning

confidence: 99%

Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007–2018 National Health Interview Survey (NHIS)

et al. 2023

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ObjectivesWe used the National Health Interview Survey (NHIS) data set to examine the prevalence of comorbid medical conditions; explore barriers to accessing healthcare and special educational services; and assess the associations between sickle cell disease (SCD) status and demographics/socioeconomic status (SES), and social determinants of health (SDoH) on comorbidities among children in the USA.DesignCross-sectional.SettingNHIS Sample Child Core questionnaire 2007–2018 data set.Participants133 481 children; presence of SCD was determined by an affirmative response from the adult or guardian of the child.Main outcome measuresMultivariate logistic regression was used to compare the associations between SCD status, SES and SDoH for various medical conditions for all races and separately for black children at p<0.05.Results133 481 children (mean age 8.5 years, SD: 0.02), 215 had SCD and ~82% (weighted) of the children with SCD are black. Children with SCD were more likely to suffer from comorbid conditions, that is, anaemia (adjusted OR: 27.1, p<0.001). Furthermore, children with SCD had at least two or more emergency room (ER) visits (p<0.001) and were more likely to have seen a doctor 1–15 times per year (p<0.05) compared with children without SCD. Household income (p<0.001) and maternal education were lower for children with SCD compared with children without SCD (52.4% vs 63.5% (p<0.05)). SCD children with a maternal parent who has < / > High School degree were less likely to have no ER visits or 4–5 ER visits, and more likely to have 2–3 ER visits within 12 months.ConclusionChildren with SCD experienced significant comorbid conditions and have high healthcare usage, with black children being disproportionately affected. Moreover, maternal education status and poverty level illustrates how impactful SES can be on healthcare seeking behaviour for the SCD population. SDoH have significant implications for managing paediatric patients with SCD in clinical settings.

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Section: Introductionmentioning

confidence: 99%

Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007–2018 National Health Interview Survey (NHIS)

et al. 2023

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“…Patients with SCD experience greater rates of poverty and fewer protective SES factors when compared with the Black/African American population in the United States 10,11 . Patients from the most disadvantaged environments are at increased risk for poor health‐related outcomes.…”

Section: Discussionmentioning

confidence: 99%

“…For pediatric patients with sickle cell disease (SCD), an inherited hemoglobinopathy predominantly seen among individuals of African descent in the United States, the dual burden of living with a chronic disease and racial inequity increases this population's vulnerability to social disparities 7 . Environmentally, patients with SCD experience greater rates of poverty and fewer protective socioeconomic factors when compared with the Black/African American population in the United States 10,11 . Patients from the most disadvantaged environments experience reduced health‐related quality of life 12 and are at higher risk for in‐hospital mortality 13 …”

Section: Introductionmentioning

confidence: 99%

“…7 Environmentally, patients with SCD experience greater rates of poverty and fewer protective socioeconomic factors when compared with the Black/African American population in the United States. 10,11 Patients from the most disadvantaged environments experience reduced health-related quality of life 12 and are at higher risk for in-hospital mortality. 13 SCD is associated with significant neurocognitive risk due to a combination of disease and environmental factors.…”

Section: Introductionmentioning

confidence: 99%

“…10,11 Patients from the most disad-Demographic and clinical characteristics of patients by genotype. Univariate analyses of demographic, medical, and treatment factors with neurocognitive scores of overall cohort.…”

mentioning

confidence: 99%

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Social determinants of neurocognitive and academic performance in sickle cell disease

Heitzer

Okhomina

Trpchevska

et al. 2023

Pediatric Blood & Cancer

Self Cite

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Background: Sickle cell disease (SCD) is associated with poor neurocognitive outcomes due to biomedical and psychosocial factors. The aims of this study were to investigate associations between household and neighborhood socioeconomic status (SES) with cognitive and academic outcomes in SCD and to determine if these relationships were modified by sickle genotype, fetal hemoglobin, or age. Procedure:We prospectively recruited patients to complete a battery of neurocognitive and academic measures. Household SES was measured using the Barratt Simplified Measure of Social Status, a composite index of parent education and occupation. The Social Vulnerability Index was used to classify individuals based on social vulnerabilities at the neighborhood level.Results: Overall, 299 patients between the ages of 4 and 18 (mean = 11.4, standard deviation = 4.3) years diagnosed with SCD (57% SS/SB 0 -thalassemia) completed testing. Stepwise multivariate models demonstrated that patients with low social vulnerability (i.e., high SES) at the neighborhood level displayed intelligence and math scores that were 4.70 and 7.64 points higher than those living in areas with moderate social vulnerability, respectively (p < .05). Reading performance did not differ based on neighborhood SES; however, the effect of neighborhood SES was dependent on age, such that older participants living in neighborhoods with moderate or high levels of social vulnerability displayed poorer reading scores than those with low social vulnerability (p < .05). Conclusions:This study identified patients with SCD at higher risk of poor academic performance based on SES. Interventions addressing academic difficulties should be offered to all children with SCD, but should be emergently offered to this subpopulation.

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Informing Digital Programs for Lupus Self‐Management Education: A Systematic Scoping Review

Carpenter,

Gilman,

French

et al. 2024

Arthritis Care & Research

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ObjectiveWe describe the characteristics, content, and effectiveness of digital self‐management (SM) education programs for lupus and other chronic conditions to identify gaps and inform the improvement of future programs in lupus.MethodsThree bibliographic databases were searched for articles published between May 2012 and April 2022. The search was cast to capture the breadth of digital SM education programs in the following conditions: lupus, epilepsy, fibromyalgia, multiple sclerosis, sickle cell anemia, Sjogren's syndrome, psoriatic arthritis, and rheumatoid arthritis. Title and abstract screening, as well as full‐text review, was conducted by two independent reviewers. Data extraction was first completed by one author charting all studies and then, a second time, by four members of the research team charting collaboratively.ResultsOf the 1,969 articles identified through the search, 14 met inclusion criteria. Two additional articles were included following bibliography review. The 16 articles represented 12 unique digital SM education programs. Programs covered five conditions: epilepsy (n=3), fibromyalgia (n=2), multiple sclerosis (n=4), lupus (n=1), and rheumatoid arthritis (n=2). Most programs were asynchronous and internet‐based (n=9) with a prescribed sequence of content (n=8). Peer, technical, or specialist support was offered in seven programs. Most programs demonstrated statistically significant improvement of symptoms in the intervention group (n=8).ConclusionThis scoping review summarizes the current landscape for digital SM education programs in lupus and similar conditions. In lupus, further investigation will fill in the gaps around digital SM education needs, user experience and evaluation of outcomes.

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Sickle cell disease and social determinants of health: A scoping review

Cited by 22 publications

References 82 publications

Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007–2018 National Health Interview Survey (NHIS)

Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007–2018 National Health Interview Survey (NHIS)

Social determinants of neurocognitive and academic performance in sickle cell disease

Informing Digital Programs for Lupus Self‐Management Education: A Systematic Scoping Review

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