A model for geographic and sociodemographic access to care disparities for adults with congenital heart disease

Salciccioli, Katherine B.; Oluyomi, Abiodun; Lupo, Philip J.; Ermis, Peter; Lopez, Keila N.

doi:10.1111/chd.12819

Cited by 56 publications

(33 citation statements)

References 31 publications

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“…Additionally, there is a desperate need for more ACHD specialists to care for this ever-growing population (Antonisse et al, 2019;Salciccioli, Oluyomi, Lupo, Ermis, & Lopez, 2019). Developing policies and practices that increase this workforce is particularly critical as the ACHD population becomes increasingly insured.…”

Section: Discussionmentioning

confidence: 99%

Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act

Salciccioli

Salemi

Broda

et al. 2021

Birth Defects Research

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Background: Data are lacking regarding the insurance status of adults with congenital heart disease (ACHD). We investigated whether the Affordable Care Act (ACA) impacted insurance status among hospitalized ACHD, identified associated sociodemographic factors, and compared coverage to adults with other chronic childhood conditions. Methods: Serial cross-sectional analysis of National Inpatient Sample hospitalizations from 2007 to 2016 was performed for patients 18-64 years old. ACHD were identified using ICD-9/10-CM codes and compared to patients with sickle cell disease (SCD), cystic fibrosis (CF), and the general population. Age was dichotomized as 18-25 years (transition aged) or 26-64 years. Groups were compared by era (pre-ACA [January 2007-June 2010]; early-ACA [July 2010-December 2013], which eliminated pre-existing condition exclusions; and full-ACA [January 2014-December 2016]) using interrupted time series and multivariable Poisson regression analyses.Results: Overall, uninsured hospitalizations decreased from pre-ACA (12.0%) to full-ACA (8.5%). After full ACA implementation, ACHD had lower uninsured rates than the general hospitalized population (6.0 vs. 8.6%, p < .01), but higher rates than those with other chronic childhood diseases (SCD [4.5%]; CF [1.6%]). Across ACA eras, transition aged ACHD had higher uninsured rates than older patients (8.9 vs. 7.6%, p < .01), and Hispanic patients remained less insured than other groups.Conclusions: Hospitalized ACHD were better insured than the general population but less insured than those with SCD or CF. Full ACA implementation was associated with improved insurance coverage for all groups, but disparities persisted for transition aged and Hispanic patients. Ongoing evaluation of the effects of insurance and health policy on ACHD remains critical to diminish health disparities.

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Section: Discussionmentioning

confidence: 99%

Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act

Salciccioli

Salemi

Broda

et al. 2021

Birth Defects Research

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“…Yet having a lack of symptoms and/or awareness of lifelong care as motives for absence does suggest a disconnect in comprehending the potential prognosis of their disease. Despite being one of only two high volume ACHD centers (at time of study period ending in 2019) in the second most populous state in the United States, institutional limitations in accepted insurance plans and lack of public awareness of accredited centers for ACHD care has constrained our ability to care for our transition-aged and ACHD patients 21 . If these hardships remain unaddressed, the ability to care for our patients will continue to be hindered and inadequate.…”

Section: Discussionmentioning

confidence: 99%

Hope is No Plan: Uncovering Actively Missing Transition-Aged Youth with Congenital Heart Disease

Moore¹,

Sheth²,

Lam³

et al. 2021

Preprint

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Background and Objectives: Studies describing gaps in care for youth with congenital heart disease (CHD), focus on those who have returned to care, but rarely those actively missing from care. Our objective was to determine barriers for young adults with CHD actively missing from cardiac care and to re-engage them in care. Methods: Retrospective single-center cohort study of cardiology clinic patients ages 15-21 years with CHD between 2012-2019 for patients actively missing from care (>12 months beyond requested clinic follow-up). We conducted prospective interviews, offered clinic scheduling information and recorded cardiac follow-up. Data was analyzed using descriptive statistics, univariable, and multivariable logistic regression. Results: Of 1053 CHD patients, 33% (n=349) were actively missing. Of those missing, 58% were male and median age was 17 yrs (IQR 16-19). Forty-six percent were Non-Hispanic White, 33% Hispanic, and 9% Black. Moderately complex CHD was in 71%, and 62% had private insurance. Patients with simple CHD, older age at last encounter (18-21), and scheduled follow-up >12 months from last encounter were more likely to be actively missing. Interviews were completed by 125 patients/parents (36%). Lack of cardiac care was reported in 52%, and common barriers included: insurance (33%), appointment scheduling (26%), and unknown ACHD center care (15%). Roughly half (55%) accepted appointment information, yet only 3% successfully returned. Conclusions: Many patients require assistance beyond CHD knowledge to maintain and re-engage in care. Future interventions should include scheduling assistance, focused insurance maintenance, understanding where to obtain ACHD care, and educating on need for lifelong care.

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“…This is of essential importance, as ≈45% of the US population lives >1 hour from an ACHD center, with an even higher proportion in rural states. 9 Further research is necessary to help identify strategies to mitigate geographic challenges and to ensure equal quality and access to care between rural and urban populations.…”

Section: Discussionmentioning

confidence: 99%

“… 7 , 8 Contributors to poor access to ACHD care include lack of insurance or underinsurance, a shortage of ACHD physicians in the United States, inadequate knowledge about the importance of follow‐up among patients and providers, and challenges related to geography and distance to care, among others. 9 , 10 Although it is likely that patients who seek care at an ACHD center differ in substantial ways from patients who are cared for in the community, the nature of these differences has yet to be defined.…”

mentioning

confidence: 99%

Association of Adults With Congenital Heart Disease–Specific Care With Clinical Characteristics and Healthcare Use

Khan¹,

McGrath²,

Ramsey

et al. 2021

JAHA

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Background Many adults with congenital heart disease (ACHD) are cared for by non‐ACHD specialists, if they receive care at all. Little is known about the differences between those who access care at an ACHD center and those who do not access ACHD‐specific care. Methods and Results The Oregon All Payer All Claims database was queried to identify subjects aged 18 to 65 years with an International Classification of Diseases, Ninth Revision ( ICD‐9 ) code consistent with ACHD from 2010 to 2015. ACHD center providers were identified using National Provider Identification numbers. Usage rates and percentages were calculated with person‐years in the denominator, and rate ratios and odds ratios (ORs) were estimated using negative binomial and logistic regression. Only 11.7% of identified individuals (N=10 199) were seen at the ACHD center. These individuals were younger (median 36 versus 47 years; P <0.0001) and had higher rates of Medicaid insurance (47.8% versus 28.4%; P <0.0001), heart failure (31.4% versus 15.3%; P <0.0001), and arrhythmia (75.5 versus 49.2%; P <0.0001). They had more visits of all types (outpatient: 79% per year versus 64% per year [age‐adjusted OR, 2.54; 99% CI, 2.24–2.88]; emergency department: 29% versus 22% per year [adjusted OR, 1.34; 99% CI, 1.18–1.52]; inpatient: 17% versus 12.0% per year [adjusted OR, 1.92; 99% CI, 1.67–2.20]). Rates of guideline‐indicated annual echocardiography were low (7.7% overall, 13.4% in patients at the ACHD center). Conclusions Patients at an ACHD center comprise a distinct and complex group with a high rate of healthcare use and a relatively higher compliance with guideline‐indicated annual follow‐up. These findings underscore the importance of building and supporting robust systems for ACHD care in the United States.

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A model for geographic and sociodemographic access to care disparities for adults with congenital heart disease

Cited by 56 publications

References 31 publications

Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act

Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act

Hope is No Plan: Uncovering Actively Missing Transition-Aged Youth with Congenital Heart Disease

Association of Adults With Congenital Heart Disease–Specific Care With Clinical Characteristics and Healthcare Use

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