When children with sickle‐cell disease become adults: Lack of outpatient care leads to increased use of the emergency department
This study found increased emergency department reliance among sickle-cell disease patients transitioning from childhood to adulthood, especially in young adults, indicating that limited outpatient care access during this period contributes to higher ED utilization, with rates notably elevated compared to children and older adults.
Young adults with sickle-cell disease have increased emergency department (ED) utilization and increased risk of mortality for unclear reasons. Emergency Department Reliance (EDR) differentiates excessive ED use due to increased need in chronic illness from increased use due to limited access to outpatient care. A higher EDR has been used to define excessive reliance on the ED and thus access to care issues leading to increased ED utilization. We conducted a retrospective cohort study of sickle-cell disease patients within the Wisconsin Medicaid database over a 5-year period to examine EDR during the transition period from childhood to adulthood. The study population included four distinct groups: (1) children, (2) patients transitioning from pediatric to adult providers, (3) young adults, and (4) adults age 31-45. Rates of visits per year were calculated for ED visits and outpatient visits for all diagnoses and sickle-cell disease-related diagnoses. Overall, we found increased EDR among the transition group and young adults compared to children and adults for sickle-cell disease-related diagnoses. These findings suggest access to care issues play a significant role in the increased ED utilization seen during the transition period from pediatric to adult providers in sickle-cell disease.
- Abstract
4
- 10.1182/blood.v116.21.83.83
- Nov 19, 2010
- Blood
Health Care Utilization Patterns and Emergency Department Reliance During Transition of Care From Pediatric to Adult Providers In Sickle Cell Disease
- Abstract
- 10.1182/blood-2023-188156
- Nov 28, 2023
- Blood
Patterns of Emergency Department Utilization of Adolescents and Young Adults Living with Sickle Cell in North Carolina
- Abstract
3
- 10.1182/blood.v130.suppl_1.128.128
- Jun 25, 2021
- Blood
Longitudinal Trend in Emergency Department Reliance for Pain Among Sickle Cell Disease Patients in Wisconsin
- Research Article
59
- 10.1111/acem.13281
- Oct 16, 2017
- Academic Emergency Medicine
For many children, the emergency department (ED) serves as the main destination for health care, whether it be for emergent or nonurgent reasons. Through examination of repeat utilization and ED reliance (EDR), in addition to overall ED utilization, we can identify subpopulations dependent on the ED as their primary source of health care. Nationally representative data from the 2010 to 2014 Medical Expenditure Panel Survey were used to examine the annual ED utilization of children age 0 to 17 years by insurance coverage. Overall utilization, repeat utilization (two or more ED visits), and EDR (percentage of all health care visits that occur in the ED) were examined using multivariate models, accounting for weighting and the complex survey design. High EDR was defined as having > 33% of outpatient visits in a year being ED visits. A total of 47,926 children were included in the study. Approximately 12% of children visited an ED within a 1-year period. A greater number of children with public insurance (15.2%) visited an ED at least once, compared to privately insured (10.1%) and uninsured (6.4%) children. Controlling for covariates, children with public insurance were more likely to visit the ED (adjusted odds ratio [aOR] = 1.55, 95% confidence interval [CI] = 1.40-1.73) than children with private insurance, whereas uninsured children were less likely (aOR = 0.64, 95% CI = 0.51-0.81). Children age 3 and under were significantly more likely to visit the ED than children age 15 to 17, whereas female children and Hispanic and non-Hispanic other race children were significantly less likely to visit the ED than male children and non-Hispanic white children. Among children with ED visits, 21% had two or more visits to the ED in a 1-year period. Children with public insurance were more likely to have two or more visits to the ED (aOR = 1.53, 95% CI = 1.19-1.98) than children with private insurance whereas there was no significant difference in repeat ED utilization for uninsured children. Publicly insured (aOR = 1.70, 95% CI = 1.47-1.97) and uninsured children (aOR = 1.90, 95% CI = 1.49-2.42) were more likely to be reliant on the ED than children with private insurance. Health insurance coverage was associated with overall ED utilization, repeat ED utilization, and EDR. Demographic characteristics, including sex, age, income, and race/ethnicity were important predictors of ED utilization and reliance.
- Abstract
- 10.1182/blood-2024-211968
- Nov 5, 2024
- Blood
Establishing a Baseline: Impact of Pain Plans on Emergency Department Reliance and Length of Hospital Stay in Sickle Cell Disease Patients
- Research Article
7
- 10.1001/jamanetworkopen.2025.13361
- Jun 2, 2025
- JAMA Network Open
Sickle cell disease (SCD) is a complex hemoglobinopathy. Vaso-occlusive episodes are the primary cause of emergency department (ED) utilization among individuals with SCD. Literature lacks a standardized definition for high ED utilization. To explore ED utilization, redefine high ED utilization, and describe factors associated with super-high ED utilization among individuals with SCD. This retrospective cohort study analyzed the North Carolina Hospital Discharge Datasets (2013-2019). Participants were included if they had SCD, defined as at least 3 SCD visits (ED, inpatient, or outpatient surgery) in a rolling 5-year period. All age groups, sexes, and payers, regardless of state of residence, were included. Data were analyzed from July 2023 to August 2024. Variables included sex, race, ethnicity, age, age at death, distance (in miles) to the closest SCD center, number of annual ED visits, and social vulnerability index (SVI). To determine ED utilization categories, first the distribution of people based on the number of annual ED visits was examined, then the categories across years were identified to determine the data-informed cutoff for each category. Univariate analysis determined differences between participants based on the ED utilization category using χ2 tests of independence or analysis of variance, as applicable. Descriptive statistics were conducted to describe characteristics of utilization in the sample and by ED utilization group. A parsimonious multinomial regression was conducted using significant factors from the univariate analysis. The cohort included 9964 unique patients (5364 [53.83%] female; mean [SD] age, 24.49 [17.54] years), including 9355 Black patients (93.89%), with 100 188 total ED visits from 2013 to 2019. ED visits were categorized into 4 levels: low (0-1 visits per year), moderate (2-9 visits per year), high (10-32 visits per year), and super high (≥33 visits per year). A small subset (178 patients [1.79%]) exhibited super-high ED utilization, contributing disproportionately to the total number of ED visits. Older age, younger age for in-facility deaths, and higher SVI were significantly associated with higher ED utilization. Patients with high utilization were more likely to die, die younger (eg, median [IQR] age at death, 33.0 [30.0-44.0] years in the super-high utilization group vs 50 [38.0-61.0] years in the moderate utilization group), use multiple EDs (eg, 93.8% of participants in the super-high utilization group vs 40.08% of participants in the moderate utilization group), and reside in counties more disadvantaged on socioeconomic and transportation characteristics. This cohort study of 7 years of North Carolina Hospital Discharge Data described 4 new categories of ED utilization in SCD. These categories could be used to reframe how high ED use is determined.
- Research Article
149
- 10.1111/acem.12347
- Apr 1, 2014
- Academic Emergency Medicine
The authors sought to describe the epidemiology of and risk factors for recurrent and high-frequency use of the emergency department (ED) by children. This was a retrospective cohort study using a database of children aged 0 to 17 years, inclusive, presenting to 22 EDs of the Pediatric Emergency Care Applied Research Network (PECARN) during 2007, with 12-month follow-up after each index visit. ED diagnoses for each visit were categorized as trauma, acute medical, or chronic medical conditions. Recurrent visits were defined as any repeat visit; high-frequency use was defined as four or more recurrent visits. Generalized estimating equations (GEEs) were used to measure the strength of associations between patient and visit characteristics and recurrent ED use. A total of 695,188 unique children had at least one ED visit each in 2007, with 455,588 recurrent ED visits in the 12 months following the index visits. Sixty-four percent of patients had no recurrent visits, 20% had one, 8% had two, 4% had three, and 4% had four or more recurrent visits. Acute medical diagnoses accounted for most visits regardless of the number of recurrent visits. As the number of recurrent visits per patient rose, chronic diseases were increasingly represented, with asthma being the most common ED diagnosis. Trauma-related diagnoses were more common among patients without recurrent visits than among those with high-frequency recurrent visits (28% vs. 9%; p<0.001). High-frequency recurrent visits were more often within the highest severity score classifications. In multivariable analysis, recurrent visits were associated with younger age, black or Hispanic race or ethnicity, and public health insurance. Risk factors for recurrent ED use by children include age, race and ethnicity, and insurance status. Although asthma plays an important role in recurrent ED use, acute illnesses account for the majority of recurrent ED visits.
- Abstract
2
- 10.1182/blood.v120.21.475.475
- Nov 16, 2012
- Blood
Age-Related Emergency Department Reliance and Healthcare Resource Utilization in Patients with Sickle Cell Disease
- Research Article
18
- 10.1111/acem.12054
- Jan 1, 2013
- Academic Emergency Medicine
The objective was to characterize the medical, social, and psychiatric correlates of frequent emergency department (ED) use among released prisoners with human immunodeficiency virus (HIV). Data on all ED visits by 151 released prisoners with HIV on antiretroviral therapy (ART) were prospectively collected for 12 months. Correlates of frequent ED use, defined as having two or more ED visits postrelease, were described using univariate and multivariate models and generated medical, psychiatric, and social multimorbidity indices. Forty-four (29%) of the 151 participants were defined as frequent ED users, accounting for 81% of the 227 ED visits. Frequent ED users were more likely than infrequent or nonusers to be female; have chronic medical illnesses that included seizures, asthma, and migraines; and have worse physical health-related quality of life (HRQoL). In multivariate Poisson regression models, frequent ED use was associated with lower physical HRQoL (odds ratio [OR] = 0.95, p = 0.02) and having not had prerelease discharge planning (OR = 3.16, p = 0.04). Frequent ED use was positively correlated with increasing psychiatric multimorbidity index values. Among released prisoners with HIV, frequent ED use is driven primarily by extensive comorbid medical and psychiatric illness. Frequent ED users were also less likely to have received prerelease discharge planning, suggesting missed opportunities for seamless linkages to care.
- Research Article
143
- 10.1111/acem.12282
- Dec 6, 2013
- Academic Emergency Medicine
While recent studies have demonstrated an overall increase in psychiatric visits in the emergency department (ED), none have focused on a nationally representative pediatric population. Understanding trends in pediatric psychiatric ED visits is important because of limited outpatient availability of pediatric specialists, as well as long wait times for psychiatric appointments. The study aim was to evaluate the trends in ED psychiatric visits for children between 2001 and 2010 with comparison by sociodemographic characteristics. This was a retrospective, cross-sectional analysis of ED psychiatric visits for children<18years of age using the National Hospital Ambulatory Medical Care Survey (NHAMCS). Visits were identified by International Classification of Diseases, Ninth Revision (ICD-9), codes. Outcome measures included frequency of visits for children with psychiatric diagnosis codes and odds and adjusted odds of psychiatric visits controlling for temporal, demographic, and geographic factors. From 2001 to 2010, an average of 28.3 million pediatric visits to EDs occurred annually. Among those, an approximately 560,000 (2% of ED visits) were psychiatric visits each year. Pediatric psychiatric ED visits increased from an estimated 491,000 in 2001 to 619,000 in 2010 (p=0.01). Teenagers (adjusted odds ratio [AOR]= 3.92, 95% confidence interval [CI]=3.37 to 4.57) and publicly insured patient visits (AOR= 1.47, 95% CI=1.25 to 1.74) had increased odds of psychiatric ED visits. Pediatric ED psychiatric visits are increasing. Teenagers and children with public insurance appear to be at increased risk. Further investigation is needed to determine what the causative factors are.
- Abstract
1
- 10.1182/blood.v114.22.2480.2480
- Nov 20, 2009
- Blood
Health Care Disparities in Sickle Cell Disease : A Population-Based Study of Los Angeles County.
- Research Article
12
- 10.1007/s00277-020-04205-0
- Aug 27, 2020
- Annals of Hematology
Sickle cell disease (SCD), a genetic disorder affecting up to 100,000 patients in the USA, impacts multiple organ systems. The emergency department (ED) is frequently utilized by patients with SCD who have severe pain from vaso-occlusive crises. The goal of this systematic literature review is to identify predictors for ED use among patients with SCD in the USA, as high ED reliance is not ideal because of the potential for discontinuity of care as well as higher costs. PubMed and Embase were searched for articles containing the keywords "sickle cell disease" AND ("emergency" OR "acute care") AND ("utilization" OR "health care") published between 2000 and 26 September 2019. A total of 26 publications were identified meeting the following inclusion criteria: report of ED or acute care clinic use; report of health care utilization for SCD; and report of ED visits independent of hospital admission, ED revisits, inpatient care visits, and SCD care unit visits. Articles unavailable in English or those focused on populations outside the USA were excluded. Of the 26 articles included, 4 were prospective and the remainder were retrospective. Qualitative analysis of the articles revealed a higher rate of ED utilization among adults than children, patients with public insurance than private insurance, and patients with more comorbidities, complications, or pain. Age and pain levels were both commonly cited as predictors of ED utilization. Additional prospective and interventional studies are needed to further define predictors of ED utilization and to uncover treatments that decrease ED visits.
- Research Article
28
- 10.1002/pbc.28587
- Jul 27, 2020
- Pediatric Blood & Cancer
In sickle cell disease (SCD), high emergency department (ED) utilization is associated with worse outcomes and increased costs. A metric called ED reliance (EDr), the percentage of healthcare visits that occur in the ED, attempts to identify ED overutilization. It is unknown if household material hardships (HMH)-housing, utility, or food insecurity-impact reliance on the ED. As these may represent modifiable risk factors for high ED utilization, we aimed to estimate the association between HMH and EDr in pediatric patients with SCD. We reviewed the electronic medical records of pediatric patients with SCD who received care in the Boston Medical Center network in Massachusetts, USA, to collect data on HMH and healthcare utilization. Using linear regression to control for potential confounders, we modeled the association between material hardships and EDr. Of 101 eligible patients, 60 (59%) reported one or more HMH.The mean EDr was 12% overall, with significant differences between those with and without HMH (15.9vs 5.9, P=0.0001). Each additional hardship experienced was associated with an increased average EDr of 7.7 percentage points (R2 =0.34, P<0.0001). Housing and utility hardships were each independently associated with increased EDr. HMH are associated with significantly increased EDr in children with SCD, independent of transportation hardship or insurance type. Through screening for HMH, providers and health systems could identify at-risk patients with modifiable risk factors for high EDr in order to provide them additional support.
- Research Article
- 10.1182/blood-2025-7985
- Nov 3, 2025
- Blood
Social determinants of health and emergency department utilization in sickle cell disease: A systematic review and meta-analysis
- Research Article
6
- 10.37765/ajmc.2020.43490
- Jun 1, 2020
- The American Journal of Managed Care
Emergency department (ED) utilization is often used as an indicator of poor chronic disease control and/or poor quality of care. We sought to determine if 2 ED utilization measures identify clinically or demographically different populations of children. Retrospective cohort study utilizing IBM Health/Truven MarketScan Medicaid data. Children and adolescents were categorized based on the presence and complexity of chronic medical conditions using the 3M Clinical Risk Group system. Children and adolescents were categorized as high ED utilizers using 2 measures: (1) ED reliance (EDR) (number of ED visits / [number of ED visits + number of ambulatory visits]; EDR >0.33 = high utilizer) and (2) visit counts (≥3 ED visits = high utilizer). Logistic regression models identified patient factors associated with each of our outcome measures. A total of 5,438,541 children and adolescents were included; 65% were without chronic disease (WO-CD), 32% had noncomplex chronic disease (NC-CD), and 3% had complex chronic disease (C-CD). EDR identified 18% as frequent utilizers compared with 7% by the visit count measure. In the visit count model, children younger than 2 years and those classified as WO-CD and NC-CD were less likely to be identified as high utilizers. Conversely, in the EDR model, children and adolescents 2 years and older and those classified as WO-CD and NC-CD were more likely to be classified as high utilizers. The ED utilization measures identify clinically and demographically different groups of patients. Future studies should consider the medical complexity of the population being studied before choosing the most appropriate measure to employ.