Continuity of Care for Acute Visits In Sickle Cell Disease: Do Patients Go to More Than One Site?

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 735-735
Author(s):  
Julie A. Panepinto ◽  
Pamela L Owens ◽  
Andrew Mosso ◽  
Claudia A Steiner ◽  
David C Brousseau

Abstract Abstract 735 Sickle cell disease is characterized by frequent and recurrent vaso-occlusive events that often require multiple acute care visits to the emergency department (ED) or hospital. Multiple visits for sickle cell disease are more common among younger adults and those with public insurance than children and older adults and those with private insurance or who are uninsured.1 It is not known, however, whether these multiple visits are made to more than one site of care which could potentially reduce the patient's quality of care. The objective of this study was to examine the continuity of acute care visits for patients with sickle cell disease, as defined by having one site of care (versus multiple sites of care). We hypothesized that children with sickle cell disease and those sickle cell disease patients with private insurance would be more likely to use one ED or hospital for their acute care, while adults with sickle cell disease and those sickle cell disease patients with public insurance would be more likely to use multiple sites of care. We conducted a retrospective cohort study using 2005 and 2006 data from the Healthcare and Cost Utilization Project State Inpatient Databases and State Emergency Department Databases. Data from eight states (AZ, CA, FL, MA, MO, NY, SC, and TN) with an encrypted patient identifier were used to examine all acute care visits for sickle cell-related diagnoses in children and adults with sickle cell disease. Our primary outcome was the proportion of patients with all acute care visits to one site. We derived a logistic regression model to examine the association between age and primary expected payer and likelihood of having a single site of care, adjusting for rurality of the patient's residence, gender, number of visits and state of residence. A total of 21,118 patients with sickle cell disease had one or more sickle cell disease -related acute care visits to the ED or hospital. There were 13,533 patients who made two or more visits. Approximately 66% of these patients (n=8,895) had public insurance as the primary expected payer. Of the 5,030 children (ages 1–17 years) with multiple visits, 77.3% went to the same site for their acute care over the two year time period. This is in contrast to the adults (n=8,503) for whom only 51.3% received all acute care at the same site. The proportion of patients who went to one site of care decreased as the number of visits made increased for both children and adults. In multivariable analyses, adolescents (10- 17 years olds) were more likely than young adults (18-30 years old) to go to one site for all acute care (adjusted odds ratio (AOR) 3.78, 95% confidence interval (CI) 3.23–4.43). Analyzing the likelihood of going to one site for all acute care by primary expected payer, uninsured patients were less likely to have one site of care compared to patients with private insurance as the expected payer, even after controlling for the number of visits. This association was especially pronounced among patients with an increased number of visits during the two year study period. When examining adults who made four acute care visits, 41.2% of those without insurance went to one site for care compared to 56.4% with private insurance and 56.5% with public insurance. In children with 4 acute care visits, 54.5% of those without insurance went to one site compared to 78.7% with private insurance and 75.2% of those with public insurance. In multivariable analysis, having public insurance and being uninsured were associated with decreased likelihoods of going to one site for all acute care (AOR 0.85, 95% CI 0.77–0.93 and AOR 0.64, 95% CI 0.55–0.74 respectively) compared to having private insurance. Young adults and patients who are uninsured or who have public insurance are more likely to go to multiple sites for their acute care compared with children and those with private insurance. Although the long-term effects of having multiple sites of acute care are unknown, it may indicate a lack of a medical home and may contribute to lower quality of care. 1. Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute Care Utilization and Rehospitalizations for Sickle Cell Disease. JAMA 2010;303(13):1288-1294. Disclosures: No relevant conflicts of interest to declare.

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 38-39
Author(s):  
Derek Chan ◽  
Fiona Kouyoumdjian ◽  
Uma Athale ◽  
Jacob Pendergrast ◽  
Madeleine Verhovsek

Background: Acute vaso-occlusive crisis (VOC) in sickle cell disease (SCD) frequently leads patients to seek emergency department (ED) care. Whether or not health inequities exist, and their exact nature, is poorly understood in ED visits for SCD VOC within a universal publicly funded healthcare system. In this study, we aimed to address this knowledge gap by characterizing the landscape of ED care burden and quality indicators for SCD VOC management in the province of Ontario, Canada. Methods: We used population-level health administrative data to identify patients with SCD in Ontario who presented to the ED with SCD VOC (ICD-10-CA code D57.0) from 2006 to 2018. We evaluated quality of care indicators in the ED for this population and compared these with a general population group matched by age, sex, neighbourhood income quintile, geography (forward sortation area) and date of ED visit (-15 to +15 days per visit) (35,370 ED visits; 27,195 patients). Results: We identified 1,811 patients who presented to the ED with SCD VOC for a total of 13,123 ED visits over the study period. Of ED presentations, 40% were pediatric (< 18 years), 47% were male and 99% lived in urban settings. Compared to ED visits for the matched group, ED visits for SCD VOC had a significantly higher proportion of high acuity triage scores (CTAS 1 or 2) (74% vs 18%; p < 0.001), shorter time to initial physician assessment (76 ± 82 vs 90 ± 86 minutes; mean ± SD, p < 0.001), longer period of ED assessment and observation (432 ± 261 vs 212 ± 179 minutes; p < 0.001), increased likelihood of hospital admission (62% vs 5%; p < 0.001), longer duration of inpatient stay (5.2 ± 6.7 vs 4.0 ± 8.1 days; p < 0.001), and higher rates of repeat ED visits within 30 days of ED discharge (0.57 ± 1.44 vs 0.26 ± 0.79 visits; p < 0.001). We found specific socio-demographic variables associated with a poorer quality of care in ED visits for SCD VOC, including patients who were adults, male, from a low-income neighbourhood, having a greater number of dependents, a higher neighbourhood level of material deprivation, from an ethnically-concentrated neighbourhood, and those who lived in a residentially unstable region. Bivariate analyses for clinically meaningful outcomes (defined as ED disposition, repeat ED visit within 30 days, length of hospital admission stay, and being among the highest user bracket of ED care) further revealed significant socio-demographic associations that validated the clinical relevance of these determinants underlying ED metric disparities found within the SCD cohort (Table 1). In subgroup comparisons, we observed a significant difference in triage acuity scoring for adults compared with children with SCD VOC, with a 25% lower rate of high acuity triage score (CTAS 1 or 2) (66% vs 86%). We also found that despite a majority of adults with SCD VOC receiving these scores compared to those in the matched group (66% vs 18%), their mean times to initial physician assessment were not significantly different (90 ± 94 vs 91 ± 89 minutes), reflecting an average SCD VOC wait time longer than the clinical practice guideline recommendation of first dose analgesic within the first 60 minutes of ED arrival. Furthermore, we identified a negative correlation between poor ED metrics and patients with SCD who were highly dependent on ED care (defined as 4-9 or ≥ 10 ED visits for SCD VOC per year) at levels significantly above the matched comparative baseline. Conclusions: Indicators of ED care for SCD largely reflect the clinical acuity and severity of VOC presentations in Ontario, Canada. However, significant disparities in the quality of care received and in clinical outcomes for specific subgroups of patients with SCD, including those most vulnerable within this patient population, raises concern from a health equity perspective.By leveraging this landscape of SCD ED care, future policy, clinical and research efforts must work to understand, address and close these gaps in order to achieve best and equitable care for all. Disclosures No relevant conflicts of interest to declare.


Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 169-169
Author(s):  
David C Brousseau ◽  
Claudia A Steiner ◽  
Pamela Owens ◽  
Andrew Mosso ◽  
Julie A. Panepinto

Abstract Abstract 169 Background: Patients with sickle cell disease have very high rates of rehospitalization, with rates as high as 40% for young adults. Many institutions have invested significant resources to utilize an inpatient hospitalization as a trigger to alter care and prevent further hospital utilization. While this focus on hospitalizations is important, there has been little attention given to return visits following treat-and-release emergency department (ED) visits. It has been shown that patients with sickle cell disease have high use of acute care resources, including the ED. Given that only half of ED visits by patients with sickle cell disease result in an inpatient stay, it may be possible to use an ED visit as a trigger for improved care rather than waiting for an inpatient hospitalization. We hypothesized that patients with sickle cell disease who were treated and released from the ED would have high rates of return for acute care utilization, both to the ED and the inpatient unit, within 14 days. We further hypothesized that young adults and those with public insurance would have the highest return for acute care utilization rates. Methods: We conducted a retrospective cohort study using 2005 and 2006 State Emergency Department Databases and State Inpatient Databases. The data are from the Healthcare Cost and Utilization Project (HCUP), a Federal-State-Industry partnership sponsored by the Agency for Healthcare Research and Quality. Data for all sickle cell-related ED visits and hospitalizations within the following eight states (AZ, CA, FL, MA, MO, SC, TN, and NY) were extracted for each patient. One-third of patients with sickle cell disease in the United States live within these states. All sickle cell related visits were linked via encrypted person-level identifiers to allow linkage of record level information, thus clustering visits by patient. Each treat-and-release ED visit served as an index visit; all subsequent ED treat-and-release visits and inpatient hospitalizations (whether through the ED or not) were tracked for periods of 7 and 14 days. ED treat-and-release visits within the seven days following a hospital discharge were excluded from being index visits. Results: A total of 12,109 patients with sickle cell disease made 39,775 ED treat-and-release visits during the two-year study period. Of the index ED treat-and-release visits, 4,162 (34.4%) children (ages 1–17 yrs) made 8,636 (21.7%) visits compared to 4,166 (34.4%) 18–30 year olds who made 17,070 (42.8%) ED treat-and-release visits. Overall, 16,731 (42.1%) of the ED treat-and-release visits had either an inpatient hospitalization or another ED treat-and-release visit within 14 days of the index ED visit; 39.7% of those return visits were inpatient hospitalizations meaning that 16.7% of ED treat-and-release visits are followed by an inpatient hospitalization within 14 days. Analyzing the 42.1% return visit rate by age and payer revealed that 49.0% of ED treat-and-release visits by 18 – 30 year old patients resulted in return visits compared to 24.7% of children and 38.6% of 46–64 year olds. 46.5% of ED treat-and-release visits by those with public insurance resulted in a return visit compared to 32.2% of visits by those with private insurance and 35.0% of those who were uninsured. As the timing of return visits might direct the intervention, we also evaluated 7 day return visits. Of the 16,731 return visits within 14 days, 12,561 (75.1%) occurred in the first 7 days; 41.1% of the 7 day return visits were inpatient hospitalizations meaning that 13% of ED treat-and-release visits were followed by an inpatient hospitalization within 7 days. Conclusions: A significant proportion of patients with sickle cell disease return for acute care following an ED treat-and-release visit, with young adults and those with public insurance having the highest rates of return visits. A high percentage of those return visits are hospitalizations. Given these findings, ED treat-and-release visits should serve as a trigger to focus enhanced outpatient comprehensive care on these patients in order to prevent a subsequent inpatient hospitalization and to ultimately improve care for patients with sickle cell disease. Disclosures: No relevant conflicts of interest to declare.


2020 ◽  
Author(s):  
Ettamba Agborndip ◽  
Benjamin Momo Kadia ◽  
Domin Sone Majunda Ekaney ◽  
Lawrence Tanyi Mbuagbaw ◽  
David C Rees ◽  
...  

AbstractBackgroundSickle Cell Disease (SCD) affects two in 100 Cameroonian new-borns, with 50-90% of affected children dying before their fifth birthday. Despite this burden, there is no national SCD programme in Cameroon. This study aimed to assess parents’ and physicians’ knowledge of SCD, their satisfaction with the quality of care and their recommendations to improve the treatment of SCD in Cameroon.MethodsA multi-centre cross-sectional survey was conducted in English and French, using structured questionnaires distributed in electronic format to physicians throughout Cameroon. Paper-based questionnaires were also administered to parents in the West and North West regions of Cameroon. Data were entered into Microsoft Excel and analysed using the SPSS statistical software.ResultsFifty-four parents and 205 physicians were recruited. We found that 72.2% of parents had good knowledge of SCD, 72.2% of parents were satisfied with the quality of care. Attending a sickle cell clinic (AOR 22, 95% CI 17.70-250) was significantly associated with having good knowledge. Just 14.2% of physicians had good knowledge and 23.3% of physicians were satisfied with the available management standards of SCD. Seeing more than five patients per month (AOR 3.17, 95% CI 1.23-8.20) was significantly associated with having good knowledge. Sickle cell clinics, national guidelines and subsidised treatment were the top three measures proposed by physicians and parents to improve the management of SCD.ConclusionKnowledge of SCD and satisfaction with care were poor among Cameroonian physicians. There is a need for a national programme and a comprehensive system of care for SCD in Cameroon.


Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1886-1886
Author(s):  
Madhav Vissa ◽  
Marsha Treadwell ◽  
Naomi Bardach

Abstract Introduction: People living with sickle cell disease (SCD) are at risk for stroke due to progressive cerebral vasculopathy. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) study showed that transfusion therapy in patients with abnormal cerebral blood flow velocities measured by transcranial doppler (TCD) ultrasound significantly reduced the risk for stroke. Based on the STOP and STOP II studies, the National Heart, Lung and Blood Institute (NHLBI) and American Society of Hematology (ASH) recommend annual TCD screenings for children with HbSS and HbSb0 genotypes from age 2-16. Despite this recommendation, studies show that fewer than half of eligible children with SCD complete annual TCD screening. Recently, Cabana and Treadwell et al. (2020) found high TCD referral and completion rates in a multi-site quality improvement (QI) initiative (85% baseline) using chart review. Another feasible approach to tracking guideline adherence uses administrative claims data which are derived from diagnostic and billing codes from statewide claims. Claims data can be used to assess population estimates for a clinic or a state, for all eligible patients, including those who may not routinely access care. In this study, we use administrative claims to assess TCD completion rates in the same clinics participating in the aforementioned QI initiative. We hypothesized that, population level rates would be lower than those assessed via chart review and that QI strategies may not lead to sustained TCD completion rates. Methods: Between August 2017 to August 2018, a QI initiative within the Pacific Sickle Cell Regional Collaborative (PSCRC) was conducted to improve referral and completion rates of TCD screenings. Site leads participated in a monthly QI learning collaborative, implementing and reporting on Plan-Do-Study-Act (PDSA) cycles, with bimonthly chart review data collection. Medicaid administrative claims from the four states with participating clinics, from 2017, 2018 (to assess baseline and post-QI initiative performance) and 2019 (to assess sustainability), were used to assess rates of TCD completion in the eligible pediatric population, using the specifications of a previously validated quality measure by Reeves et al (2019). Annual TCD completion rates and changes in completion rates over time were assessed for each site and state. Results: Five sites from four states in the PSCRC were included in the analysis. There was large variability in the number of eligible patients in each clinic (13-75) and state (23-588). Based on administrative claims, TCD clinic-level completion rates at baseline ranged from 41.7% to 69.2% at individual clinics. After 12 months of QI participation, TCD completion rates improved at all sites (range 4.6% to 29.2%). The site with the largest change improved TCD completion rate from 41.7% to 70.8% (n=24). All but one site had a decrease in TCD completion rate after completing the QI initiative and in 2019, TCD completion rates were within 10% of baseline completion rates at all sites (range -8.2% to 8.3%). At the statewide level, one state had a sustained improvement in TCD completion (improvement from baseline: 8.8%). In three of the four states providing data, TCD completion rates decreased from baseline (range -0.7% to -12.6%). Discussion: In a regional collaborative, we found improvements in TCD completion in the setting of a QI initiative focused on TCD, which were not sustained in the year after. This suggests the need for a systems-level approach to improvement, leading to feasible sustainability when no longer the focus of a collaborative. In addition, our data show that, when using administrative claims, rates of TCD completion are lower than rates when using chart review data (41.7% to 69.2% vs. 85% by chart review noted in prior publication). Thus, while site-specific medical record review provides insight into the quality of care for patients seen in the clinic, administrative claims data allow for a global understanding of the quality of care for the clinic population at risk, including those who do not attend clinic regularly. This suggests additional potential focus for quality improvement initiatives, such as systems to optimize outreach to patients who may not routinely access care. This type of outreach may best be done by health plans, potentially in partnership with sickle cell specialists, and would be an important tool for improving health for children with SCD. Disclosures Vissa: Global Blood Therapeutics Inc: Research Funding. Treadwell: National Alliance of Sickle Cell Centers: Other: Early Evaluation of the Use of Crizanlizumab in Sickle Cell Disease.


2019 ◽  
Vol 8 (10) ◽  
pp. 1594 ◽  
Author(s):  
Brousse ◽  
Arnaud ◽  
Lesprit ◽  
Quinet ◽  
Odièvre ◽  
...  

This study’s objective was to assess, on a national scale, residual risks of death, major disease-related events, and quality of care during the first five years in children diagnosed at birth with sickle cell disease (SCD). Data were retrospectively collected from medical files of all children with SCD born between 2006–2010 in France. Out of 1792 eligible subjects, 1620 patients (71.8% SS or S/beta°-thalassemia -SB°-) had available follow-up data, across 69 centers. Overall probability of survival by five years was 98.9%, with 12/18 deaths related to SCD. Probability of overt stroke by five years in SS/SB° patients was 1.1%, while transcranial Doppler (TCD) was performed in 81% before three years of age. A total of 26 patients had meningitis/septicemia (pneumococcal in eight cases). Prophylactic penicillin was started at a median age of 2.2 months and 87% of children had received appropriate conjugate pneumococcal vaccination at one year. By five years, the probability of survival without SCD-related events was 10.7% for SS/SB° patients. In contrast, hydroxyurea was prescribed in 13.7% and bone marrow transplant performed in nine patients only. In this study, residual risks of severe complications were low, probably resulting from a good national TCD, vaccination, and healthcare system coverage. Nonetheless, burden of disease remained high, stressing the need for disease-modifying or curative therapy.


Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3267-3267
Author(s):  
Nathan R. Stehouwer ◽  
Bohyung Park ◽  
Preston Edge ◽  
Hong Li ◽  
Connie M. Piccone ◽  
...  

Abstract Background Painful vaso-occlusive crises (VOC) are the most common cause of emergency department (ED) visits in patients with sickle cell disease (SCD) and are a major point of contact between patients and the health care system. Transition from pediatric to adult care has not been studied in the acute care setting. We examined whether management of VOC in adolescents and young adults differed between the pediatric and the adult ED. Methods A retrospective chart review was performed for all ED encounters in our hospital system for acute pain in patients with SCD, ages 13-23 years, between 2011-2013. Comprehensive medication administration data was collected for the ED visit as well as for the ensuing hospitalization, when applicable. Demographics and baseline medical data were collected. The equianalgesic dose, expressed as mg of intravenous (IV) morphine, and time to first analgesic administration were calculated. Equianalgesic dose and time to first analgesic were compared between the pediatric and adult ED using analysis of variance. In patients who were hospitalized, the total opioid dose received in the first 24 hours and the mean daily total opioid dosage during hospitalization were compared. Results were adjusted for correlation within multiple visits by individual patients, baseline hemoglobin, and presenting pain scores. Results: 193 visits by 45 subjects, half of whom were male (44% M pediatric, 56% M adults), and most of whom had either HbSS or HbSβ0 (59% pediatric, 83% adults), were examined. Time to medication administration in the pediatric ED was 72 minutes vs 131 minutes in the adult ED (p<0.05, Figure 1A). Opioid medications were administered in 96% of all visits. The adjusted equianalgesic dose of the first opioid medication was 5.4 mg and 10.6 mg in the pediatric and the adult ED, respectively (p<0.0001, Figure 1B). The first opioid administered was parenteral hydromorphone in 4% of pediatric visits and 72% of adult visits. Preliminary analysis suggests that transition-age patients also received higher medication dosages during ensuing admissions to the adult hospital when compared with the pediatric hospital. In a secondary analysis of 5 patients seen in both the pediatric and adult EDs during the study period, wait times were 56 and 158 minutes (p<0.05), and the equianalgesic doses of the first opioid administered were 4.7 mg and 7 mg, respectively (p<0.05). Conclusions These data suggest significant differences in acute pain management between pediatric and adult hospitals for transition-age patients with SCD. Possible reasons for observed differences include a larger patient volume in the adult ED, increasing disease severity with age, and the preference for use of higher potency hydromorphone among adult providers. Our data suggest that optimal transition management for adolescents with SCD must include strategies for transition in acute care management, focusing on limiting wait times and consistent dosing and titration of pain medications. Disclosures No relevant conflicts of interest to declare.


2020 ◽  
Vol 135 (4) ◽  
pp. 442-451
Author(s):  
Elissa Z. Faro ◽  
Lisa Shook ◽  
Marsha J. Treadwell ◽  
Allison A. King ◽  
Lauren N. Whiteman ◽  
...  

Objectives Coordinated measurement strategies are needed to inform collaborative approaches to improve access to and quality of care for persons with sickle cell disease (SCD). The objective of our study was to develop a multilevel measurement strategy to assess improvements in access to and quality of care for persons with SCD in 4 US regions. Methods From 2014 through 2017, regional grantees in the Sickle Cell Disease Treatment Demonstration Program collected administrative and patient-level electronic health record (EHR) data to assess quality improvement initiatives. Four grantees—covering 29 US states and territories and an SCD population of 56 720—used a collective impact model to organize their work. The grantees collected administrative data from state Medicaid and Medicaid managed care organizations (MCOs) at multiple points during 2014-2017 to assess improvements at the population level, and local patient-level data were abstracted from site-level EHRs at regular intervals to track improvements over time. Results Administrative data were an important source of understanding population-level improvements but were delayed, whereas patient-level data were more sensitive to small-scale quality improvements. Conclusions We established a shared measurement approach in partnership with Medicaid and Medicaid MCO stakeholders that can be leveraged to effectively support quality improvement initiatives for persons with SCD in the United States.


Medicine ◽  
2016 ◽  
Vol 95 (35) ◽  
pp. e4528 ◽  
Author(s):  
Christian T. Evensen ◽  
Marsha J. Treadwell ◽  
San Keller ◽  
Roger Levine ◽  
Kathryn L. Hassell ◽  
...  

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