Characteristics of Sickle Cell Patients with Frequent ED Visits and Hospitalizations: Demographic, Clinical, Laboratory and Psycho-Social Aspects

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2501-2501 ◽  
Author(s):  
Kyle Michael Kidwell ◽  
Camila Albo ◽  
Michael Pope ◽  
Latanya Bowman ◽  
Hongyan Xu ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Clinical Laboratory ◽  
Anxiety And Depression ◽  
Cell Disease ◽  
High Utilizers ◽  
The Us ◽  
Ed Visits ◽  
High Utilizer

Abstract Vaso-occlusive episodes (VOE), are considered a hallmark of sickle cell disease (SCD), and account for >90% of health care encounters for this patient population. Although an orphan disease (total number of patients in the US ~110,000), SCD has a huge medical-economic impact, with annual hospitalization costs of nearly $ 0.5 billion by 2004 figures, mostly for VOEs. The Cooperative Study of Sickle Cell Disease (CSSCD) was a large natural history study, carried in 23 Centers in the US, enrolling >3000 patients between 1977-93. An analysis of the frequency of VOEs in CSSCD showed that the majority of patients (80%) experienced 0-3 major pain crises/year; this was similar across all genotypes of the disease (SS, SC, Sβ0 thalassemia, Sβ+ thalassemia). Only a small minority (~5%) experienced ≥6 VOEs/year. Similar findings have been reported in subsequent, smaller studies, with 5-10% of SCD patients with frequent ED visits and hospitalizations. Hydroxyurea (HU), the only disease modifying agent approved for adults with SCD, results in a ~50% reduction in the frequency of VOEs and hospitalizations. Despite this, HU is underutilized in SCD. Recent NIH evidence based guidelines includes strong recommendations for HU therapy in the majority of SCD patients. Although 230 of the 650 adult SCD patients at our Center are prescribed HU, in a recent study we found that ~40% of these patients were non-adherent, based upon their own admission, and/or the lack of anticipated change in several laboratory parameters (Hb F, MCV, Hb, WBC, reticulocyte and platelet count). A minority of SCD patients followed at our Center have frequent ED visits and hospitalizations. We conducted a study analyzing demographic, clinical, laboratory and psycho-social characteristics of 25 patients with ≥6 ED visits and hospitalizations per year (high utilizers), and compared these with 9 patients (controls) who experienced ≤2 ED visits/hospitalizations (low utilizers). Data on gender, age, genotype, number of ED visits and hospitalizations, CBC, chemistry panel, Hb F, HU usage, opioid use (morphine equivalents), education level, employment, annual income and marital status were collected. All subjects were also administered a depression, anxiety and Health Locus of Control Questionnaire, and underwent quantitative sensory testing (QST) with three different modalities: pressure pain sensitivity with a hand held, computerized algometer (AlgoMed, Medoc, Israel), heat and cold sensitivity (Q-Sense, Medoc, Israel) and Von Frey monofilament testing for neuropathic pain. Of the 25 patients (13M, 12F), 19 were SS, 4 SC, 1 SD-Los Angeles and 1 Sdβ-thalassemia. The median age was 28 (range 21-49). In the low utilizer group (6M, 3F) all were SS with a median age of 39 (range 23-46). The average number of hospitalizations in the high utilizer group was 15.6/year (range 6-33), while in the low utilizer group it was 0.44/year. Annual opioid usage as mg morphine equivalents was significantly higher in the high utilizers (12125.7 mg vs 2423.1 mg, p=0.0048). 19/25 (76%) of high utilizers, and 7/9 (78%) of low utilizers were on HU. Laboratory data on both groups are shown in Table 1. High utilizers had significantly higher WBC, ANC, total bilirubin and lower MCV. Hb F was also lower in the high utilizers (11.8% vs 17.5%) although this did not reach significance. QST results showed significantly lower pressure pain threshold at ulna (224.4 KPa vs 338.9 KPa, p=0.04), and higher baseline sensitivity with von Frey monofilament (0.92 vs 0.33, p=0.056) in the high utilizer group. High utilizers also had a higher anxiety score (9.0 vs 4.6, p=0.039) and depression score (10.0 vs 6.0, p=0.051). While the low utilizers had higher education levels with more associate and bachelor degrees (p=0.009), there was no difference in household income. These data show that multiple factors contribute to high health care utilization in SCD; these include biologic (younger age, disease severity as indicated by higher WBC and ANC, bilirubin, opioid induced hyperalgesia, and poor adherence to HU) as well as psycho-social factors (higher anxiety and depression scores, lower educational status). A multi-disciplinary and multi-faceted approach, including a sound patient education and transition program, a concerted effort to increase adherence to HU therapy, and psycho-social as well as pharmacologic approaches to anxiety and depression will be required to address this complex problem. Disclosures Kutlar: Novartis Pharmaceuticals: Research Funding.

scholarly journals Characteristics of sickle cell patients with frequent emergency department visits and hospitalizations

PLoS ONE ◽  
2021 ◽  
Vol 16 (2) ◽  
pp. e0247324
Author(s):  
Kyle Kidwell ◽  
Camila Albo ◽  
Michael Pope ◽  
Latanya Bowman ◽  
Hongyan Xu ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Emergency Department Visits ◽  
Cold Sensitivity ◽  
Cell Disease ◽  
Pressure Pain ◽  
High Utilizers ◽  
Ed Visits ◽  
High Utilizer

Vaso-occlusive episodes (VOEs) are a hallmark of sickle cell disease (SCD), and account for >90% of health care encounters for this patient population. The Cooperative Study of Sickle Cell Disease, a large study enrolling >3000 patients, showed that the majority of SCD patients (80%) experienced 0–3 major pain crises/year. Only a small minority (~5%) experienced ≥6 VOEs/year. Our study sought to further understand this difference in VOE frequency between SCD patients. We analyzed 25 patients (13M/12F, mean age of 28.8) with ≥6 ED visits or hospitalizations/year (high utilizers), and compared these with 9 patients (6M/3F, mean age of 37.6) who had ≤2 ED visits or hospitalizations/year (low utilizers). All subjects were given a demographic survey along with questionnaires for depression, anxiety, and Health Locus of Control. Each subject then underwent quantitative sensory testing (QST) with three different modalities: pressure pain sensitivity, heat and cold sensitivity, and Von Frey monofilament testing. Laboratory and clinical data were collected through subjects’ medical records. CBC and chemistry analysis showed high utilizers had higher WBC (p<0.01), ANC (p<0.01), total bilirubin (p = 0.02), and lower MCV (p = 0.03). Opioid use (morphine equivalents) over the past 6 months was significantly higher in the high utilizer group (12125.7 mg vs 2423.1 mg, p = 0.005). QST results showed lower pressure pain threshold at the ulna (224.4 KPa vs 338.9 KPa, p = 0.04) in the high utilizer group. High utilizers also had higher anxiety (9.0 vs 4.6, p = 0.04) and depression scores (10.0 vs 6.0, p = 0.051). While the low utilizer group had higher education levels with more associate and bachelor degrees (p = 0.009), there was no difference in income or employment. These data show that many biological and psychosocial factors contribute to high health care utilization in SCD. A multi-disciplinary and multi-faceted approach will be required to address this complex problem.

Describing Adherence to Recommended Preventative Care Behaviors Among Adults with Sickle Cell Disease

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2058-2058
Author(s):  
Sophie Lanzkron ◽  
Carlton Haywood ◽  
Gladys T Onojobi ◽  
John J. Strouse ◽  
Mary Catherine Beach
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Provider ◽  
Research Funding ◽  
Patient Adherence ◽  
Preventative Care ◽  
Cell Disease ◽  
Ed Visits

Abstract Abstract 2058 Background: Healthcare professionals caring for patients with sickle cell disease (SCD) anxiously await the release in late 2012 of evidence-based guidelines for primary care physicians. These guidelines are anticipated to include a number of recommendations for health care strategies designed to improve outcomes for SCD patients. As these guidelines become widely disseminated, the evaluation of patient adherence to recommended preventative care will be an essential component of efforts to monitor the quality of health and health care for the SCD population. Unfortunately, there is a dearth of baseline information regarding current levels of SCD patient adherence to recommended therapies. The objective of our study was to describe current levels of self-reported adherence to recommended therapies among a large sample of adults with SCD. Methods: We used data collected as part of a large cohort study of sickle cell patient experiences with care to describe sickle cell patient's self-reported adherence to a number of currently recommended preventative care behaviors. We also examined the association of different levels of adherence with self-reported levels of acute emergency department (ED) and inpatient hospital utilization over the prior 12 months. Results: 292 individuals completed baseline study questionnaires and had completed chart abstractions. The average age of participants was 34.5 (95% CI 33.1–36.), 97% were black or African American and 54% were female. 70% had either SS or SB0thal (sickle cell anemia-SCA), 21% were SC and 9% had Sb+thal. Of the 252 respondents who provided info on income, 50% reported an annual income less than $30k/yr. Those with SCA were significantly younger than those with other genotypes (33 yrs v 37 yrs p=0.02). 91% of patients reported seeing a sickle provider every year, while 73% reported seeing a primary care provider once a year. 45% of patients reported seeing a dentist in the prior year, 58% of all patients reported seeing an eye doctor in the last year. However among the 24% of patients with documented retinopathy, only 65% had seen an eye doctor in the prior year. 82% of patients had received both an influenza vaccine in the prior year and a pneumococcal vaccine within 5 years. Those with low income were less likely to report seeing a SCD provider in the prior 12 months than those with higher incomes (87% v 94% p=0.049). A significant majority of patients (88%) reported high levels (i.e. a self-report of often/very often) of adherence to taking medications as prescribed. 79% reported high-levels of adherence to keeping their clinic appointments. 87% reported high-levels of adherence in following their doctor's directions. In bivariate analyses examining those preventative care behaviors with a significant impact on outcomes, we found that those patients reporting high-levels of adherence to their medical appointments reported fewer ED visits (p=0.015) and fewer inpatient hospitalizations (p=0.005) over the prior 12 months than those with lower levels of adherence. High self-reported levels of compliance with doctor's instructions was associated with fewer ED visits, but not fewer inpatient visits, over the same 12-month period. There was no bivariate correlation between seeing a sickle cell provider or primary care provider annually with outcomes, though this may be due to the overall high levels of adherence to these behaviors that we observed in our sample. In ordinal logistic regression analyses controlling for age, education, and poverty levels, high self-reported levels of compliance with doctor's instructions exhibited an independent association with lower levels of ED visits (OR = 0.44, 95%CI [0.21, 0.90]). Conclusions: We report relatively high levels of self-reported adherence to some, but not all, recommended preventative care behaviors among a sample of adults with SCD. The relatively low levels of adherence to dental and eye care recommendations should be noted as areas of focus for future interventions. Relationships between providers and SCD patients are notoriously rife with conflict. The association of high levels of compliance with doctor's instructions with lower levels of acute care utilization observed here suggests a need to identify the specific factors and mechanisms within provider-SCD patient relationships that successfully lead to improved clinical outcomes. Disclosures: Lanzkron: Hemaquest: Membership on an entity's Board of Directors or advisory committees; NHLBI: Research Funding. Haywood:NHLBI: Research Funding. Strouse:NHLBI: Research Funding. Beach:NHLBI, NIMH: Research Funding; Merck: Speakers Bureau.

High Resource Utilizers From The Multicenter Compact Study Of Complications In Patients With Sickle Cell Disease and Utilization Of Iron Chelation Therapy

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 982-982
Author(s):  
Lanetta B Jordan ◽  
Patricia Adams-Graves ◽  
Julie Kanter-Washko ◽  
Patricia A Oneal ◽  
Medha Sasane ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Research Funding ◽  
Chelation Therapy ◽  
Iron Chelation ◽  
Iron Chelation Therapy ◽  
Cell Disease ◽  
High Utilizers ◽  
Ed Visits ◽  
High Utilizer ◽  
High Utilization

Abstract Introduction While treating patients (pts) with sickle cell disease (SCD) can be costly, costs are not evenly distributed across pts; rather, a minority of pts accounts for a majority of costs. Identifying those pts who consume a disproportionately large share of healthcare resources can assist payers and providers in directing appropriate and targeted interventions to deliver better pt care with lower costs. The objective of this study was to understand characteristics of pts who have increased utilization of inpatient (IP) and emergency department (ED) resources in a population of SCD pts ≥16 years old. Method Medical records of 254 SCD pts ≥16 years old were retrospectively reviewed between 8/2011 and 7/2012 at three US tertiary care centers. The high utilization threshold was derived from the literature and defined as pts with ≥ 5 days of IP+ED care (assuming 1 day/ED visit) for SCD-related complications per year (high utilizer group). Pts were also classified into cohorts based on cumulative blood transfusion units and use iron chelation therapy (ICT): <15 units, no ICT (Cohort 1 [C1]), ≥15 units, no ICT (Cohort 2 [C2]), and ≥15 units, with ICT (Cohort 3 [C3]). SCD complication rates were expressed as the number of SCD complications per pt per year (PPPY); rate ratios (RRs) were used for cohort comparisons. A logistic regression was used to identify risk factors associated with high utilization of IP+ED care. Results Of the 254 pts (C1: 69, C2: 91, C3: 94), 30% (n =76) were classified as high utilizers (C1: 14 [18.4%], C2: 37 [48.7%], C3: 25 [32.9%]). Patients in the high utilizer group were younger (median [range] (21 years old [16-65], vs. 23 years old [16-59]) and had shorter follow-up (4.2 years [0.6-23.9], vs. 5.4 years [0.5-33.3]) compared to the rest of the sample. Those in the high utilizer group accounted for 68% of all SCD-related complications and over 88% of all IP+ED days for treatment of these complications. Similar to the rest of the sample, pain (81%) and infection (7%) were the two key complications seen in this high utilizer group. The rate of IP +ED days was significantly higher among the high utilizer group with 16.63 [16.28-16.99] IP+ED days PPPY compared to 0.89 [0.84-0.94] PPPY for other pts. Similarly, the high utilizer group had 4.58 [95% CI: 4.39-4.76] IP+ED visits PPPY, compared to 0.34 [0.31-0.37] visits PPPY for other pts (Table). Among regularly transfused pts (C2+C3) in the high utilizer group, those who received ICT had lower rates of IP+ED visits (C2 vs. C3 rate ratio [RR] [95% CI]: 1.31[1.20-1.44]), IP+ED days (C2 vs. C3 RR: 1.30 [1.24-1.36]), and readmission to IP+ED settings within 30 days (1.70 [1.49-1.93]) compared with those who did not (Table). History of infections (odds ratio: 7.45, p<0.0001) was associated with an increased risk of high utilization of IP+ED care. Conclusion Results from this study show that a relatively small fraction of SCD pts account for the majority of IP+ED visits. Moreover, among regularly transfused pts identified as high utilizers, those who received ICT had lower rates of IP+ED utilization than those who did not. Pts receiving ICT may also receive closer monitoring, which may help with early identification and intervention to delay or prevent the development of complications and improve outcomes. Closer management of pts with SCD, especially those at risk of becoming high utilizers, is critical to lowering IP+ED utilization and reducing the overall costs of care. Disclosures: Jordan: Novartis Pharmaceuticals Corporation: Consultancy. Adams-Graves:Analysis Group, Inc.: Research Funding. Kanter-Washko:Analysis Group, Inc.: Research Funding. Oneal:Novartis Pharmaceuticals Corporation: Honoraria; Analysis Group, Inc.: Research Funding. Sasane:Novartis Pharmaceuticals: Employment. Vekeman:Novartis Pharmaceuticals: Research Funding. Bieri:Novartis Pharmaceuticals Corporation: Research Funding. Marcellari:Novartis Pharmaceuticals Corporation: Employment. Magestro:Novartis Pharmaceuticals: Employment. Adams:Novartis Pharmaceuticals Corporation: Research Funding. Duh:Novartis Pharmaceuticals: Research Funding.

scholarly journals Characteristics and Trends of Sickle Cell Disease Patients Once Presented to the Emergency Department, Reflecting on a Possible Burden: United States (2010-2015)

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4845-4845
Author(s):  
Tarek Haykal ◽  
Ragheed Al-Dulaimi ◽  
Josiane Kerbage ◽  
Varun Samji ◽  
Sowmya Goranta ◽  
...  
Keyword(s):  
United States ◽  
Emergency Department ◽  
Sickle Cell Disease ◽  
Life Expectancy ◽  
Medical Care ◽  
Sickle Cell ◽  
National Database ◽  
Cell Disease ◽  
The Us ◽  
Ed Visits

Background: Sickle cell disease (SCD) is an autosomal recessive, multisystem disorder, characterized by chronic hemolytic anemia, painful episodes of vaso-occlusion, progressive organ failure and a reduced life expectancy. SCD is the most common monogenetic disease, with millions affected worldwide. It is estimated that there are 100,000 people living with SCD in the United States (US). Patients with SCD often use emergency department (ED) services to obtain medical care. Limited nationwide information in the recent years is available about ED use among patients with SCD. Methods: Data from the National Hospital Ambulatory Medical Care Survey (NHAMCS) for the years 2010-2015 were analyzed, to examine the prevalence and care of SCD patients in the EDs across the US. The NHAMCS is a survey of hospital ED and outpatient visits. Cases were identified using ICD 9 codes and all analyses accounted for complex survey structure of the data. Results: On average, approximately 1.4 million ED visits were estimated to have occurred between the years 2010 and 2015 with SCD as one of the diagnoses listed, where 860,000 were attributed to sickle cell crises. 37.29% were of female sex while 62.71% were males. 11.62% were under 15 years of age, 28.22% were between 15 and 24 years of age, 51.15% were between the ages of 25 and 44 years and 9.02% were older than 45 years. The chief complaint for the majority of cases was pain. The expected source of payment were Medicare and Medicaid at 30.45% and 41.98% respectively, while private insurance coverage and self-pay were only at 11.71% and 5.81% respectively. Of all SCD ED visits, 68.5% were considered as initial presentations and up to 23.37% were considered as follow-up. 33.31% of the visits ended up needing a hospital admission while 66.69% got discharged from the ED.In 43.39% of the visits, a form of imaging was ordered, compared to 56.61% where it was not. Upon getting triaged in the ED, 67.62% of all SCD visits needed either emergent or urgent medical attention, while the rest were either none-urgent, or a regular check-up. Conclusion: In well-resourced countries, like the US, comprehensive care programs have increased life expectancy of sickle cell disease patients, with almost all infants surviving into adulthood. However unfortunately with poor control of the disease due to limited therapeutic options and with growing morbidity for the aging SCD patients, the burden on the medical system becomes extremely high. Our study highlights the significant burden SCD creates in the EDs across the US based on data collected from a national database. Disclosures No relevant conflicts of interest to declare.

The First National Level Estimate of Emergency Department Charges for Sickle Cell Disease.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 553-553
Author(s):  
Sophie Lanzkron ◽  
Carlton Haywood
Keyword(s):  
Emergency Department ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Patient Population ◽  
Conflicts Of Interest ◽  
National Level ◽  
Cell Disease ◽  
Sampling Weights ◽  
The Us ◽  
Ed Visits

Abstract Abstract 553 First National Level Estimate of Emergency Department Charges for Sickle Cell Disease It is estimated that there are 100,000 people with sickle cell disease (SCD) living in the US. Little data is currently availabel on the number of emergency room visits made per year by this patient population. Given prior data demonstrating the cost savings associated with comprehensive care delivery and specialized day hospital units that have decreased ED visits and hospitalizations, our goal was to estimate the national burden of SCD care in the ED setting. The purpose of this study was to estimate the number of ED visits made by SCD patients in 2006, the total and average charges for those visits and the subsequent hospital admissions, and to identify factors that predicted if patients were admitted to the hospital. In addition, we used the online Healthcare Cost and Utilization Project program (HCUP) to compare the number of SCD visits with the number of ED visits and subsequent admissions for other chronic illnesses. Methods: The Nationwide Emergency Department Sample (NEDS) contains information from 950 hospitals and approximates a 20% stratified sample of US hospital based EDs. Data is currently only availabel for 2006. Using this dataset we identified all ED visits with the following SCD ICD9 codes 28260,28261,28262,28263,28264,28268,28269,28241,28242 listed anywhere in the diagnosis list. Bivariate and multivariate analyses were conducted using t-tests, oneway ANOVAs, and multiple linear or logisitic regressions as appropriate. Sampling weights are included in the NEDS to allow for the generation of national estimates. In addition to the full NEDS dataset the Agency for Healthcare Research and Quality makes availabel on-line a query system based on HCUP data free on its website. We used this system to collect data on total ED visits for asthma, HIV and congestive heart failure (CHF) that ended in a hospital admission using the clinical classification software codes 128, 5, and 108 as defined in the HCUP system. Results: There were a total of 58993 ED visits for patients with SCD sampled in the NEDS in 2006, representing a national estimate of 232,381 ED visits. Using the weighted data there were an estimated 190,000 adult ED visits and 44,000 pediatric visits. The total charges for all of the ED visits were estimated to be $266 million of which 191 million were for patients not subsequently admitted to the hospital. Being female and adult resulted in significantly higher ED charges. 50% of the visits were covered by Medicaid, 22% by Medicare, 18% were private pay, 7.5% self-pay and the remainder were no charge or other. 60% of the visits occurred in the South, 18% in the Northeast, 15% in the Midwest and 7% in the West. 5% of the visits had a code for pneumonia, 0.25% had a code for stroke and 7.3% had a code for asthma. These ED visits resulted in an estimated 91,000 hospitalizations. Pediatric patients were more likely to be admitted than adult patients (44% v 38% p=0.03). The combined ED and inpatient charges for those admitted were estimated to be $2.7 billion with a mean charge of $23,669 (range $591-871,111). 64 individuals are estimated to have died in the ED and another 522 died during their hospital stay. The average age of those that died in the ED was 33 and in the hospital was 42. In adjusted analyses being female, in the pediatric age group, or having a code for sickle crisis, asthma, stroke or pneumonia all were associated with a significant increase in odds of being admitted to the hospital. Table 1 shows the comparison number of admissions from the ED for SCD, asthma, HIV and CHF. Conclusions: Given the size of the US sickle population this data suggests that the ED is a major source of care for this patient population. Given that there are over 2 billion dollars in charges for those admitted from the ED, a focus of improving quality of care and decreasing costs of care should be eliminating ED use by the SCD population by providing alternative venues for treatment of painful crises that is more likely to result in a discharge home. Disclosures: No relevant conflicts of interest to declare.

Quality Metrics and Health Care Utilization for Adult Patients with Sickle Cell Disease

2019 ◽  
Vol 111 (1) ◽  
pp. 54-61 ◽  
Author(s):  
Monica Ter-Minassian ◽  
Sophie Lanzkron ◽  
Alphonse Derus ◽  
Elizabeth Brown ◽  
Michael A. Horberg
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Health Care Utilization ◽  
Sickle Cell ◽  
Quality Metrics ◽  
Adult Patients ◽  
Care Utilization ◽  
Cell Disease

scholarly journals Utilization, trust and satisfaction with health care in adult sickle cell disease patients

2020 ◽  
Author(s):  
Jacquelyn Baskin ◽  
Anne Nord ◽  
Dawn Canada ◽  
Kelly Russell ◽  
Payal Shah ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

scholarly journals Dissemination of Evidence-Based Recommendations for Sickle Cell Disease to Primary Care and Emergency Department Providers in North Carolina: A Cost Benefit Analysis

2021 ◽  
Vol 8 (1) ◽  
pp. 18-28
Author(s):  
Paula Tanabe ◽  
Audrey L. Blewer ◽  
Emily Bonnabeau ◽  
Hayden B. Bosworth ◽  
Denise H. Clayton ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Emergency Department ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Cost Benefit ◽  
Care Utilization ◽  
Evidence Based ◽  
Cell Disease ◽  
Ed Visits

Background: Sickle cell disease (SCD) is a genetic condition affecting primarily individuals of African descent, who happen to be disproportionately impacted by poverty and who lack access to health care. Individuals with SCD are at high likelihood of high acute care utilization and chronic pain episodes. The multiple complications seen in SCD contribute to significant morbidity and premature mortality, as well as substantial costs to the healthcare system. Objectives: SCD is a complex chronic disease resulting in the need for primary, specialty and emergency care. Many providers do not feel prepared to care for individuals with SCD, despite the existence of evidence-based guidelines. We report the development of a SCD toolbox and the dissemination process to primary care and emergency department (ED) providers in North Carolina (NC). We report the effect of this dissemination on health-care utilization, cost of care, and overall cost-benefit. Methods: The SCD toolbox was adapted from the National Heart, Lung, and Blood Institute recommendations. Toolbox training was provided to quality improvement specialists who then disseminated the toolbox to primary care providers (PCPs) affiliated with the only NC managed care coordination system and ED providers. Tools were made available in paper, online, and in app formats to participating managed care network practices (n=1800). Medicaid claims data were analyzed for total costs and benefits of the toolbox dissemination for a 24-month pre- and 18-month post-intervention period. Results: There was no statistically significant shift in the number of outpatient specialty visits, ED visits or hospitalizations. There was a small decrease in the number of PCP visits in the post-implementation period. The dissemination resulted in a net cost-savings of $361 414 ($14.03 per-enrollee per-month on average). However, the estimated financial benefit associated with the dissemination of the SCD toolbox was not statistically significant. Conclusions: Although we did not find the expected shift to increased PCP visits and decreased ED visits and hospitalizations, there were many lessons learned.

scholarly journals COVID Symptoms and COVID Anxiety in Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 16-17
Author(s):  
Wally R Smith ◽  
Benjamin Jaworowski ◽  
Shirley Johnson ◽  
Thokozeni Lipato ◽  
Daniel M Sop
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Telephone Survey ◽  
Cell Disease ◽  
Weighted Mean ◽  
The Us ◽  
Associated Symptoms ◽  
At Home

Background Even before the US upswing of the current COVID pandemic, the number of sickle cell disease (SCD) patients coming to hospitals and EDs appeared to fall drastically. This happened despite SCD patients having often been heavy utilizers of the ED and hospital for their iconic vaso-occlusive crises (VOC). Though ambulatory SCD clinics quick converted largely to telehealth in order to comply with stay-at-home orders designed to suppress person-to-person transmission, some SCD patients appeared to avoid care, delay care, or refuse doctors' invitations for care. Presumably patients did so out of COVID fears, but this has not been confirmed in the literature. Further, whether these patients had COVID symptoms but stayed at home has not been studied. As part of quality improvement (QI) to conduct COVID surveillance in an adult sickle cell program, we sought to explain and predict SCD health care utilization patterns we were observing, as well as to determine urgent physical and mental health needs of patients who appeared to be avoiding care. Methods Fifteen staff in the Adult Sickle Cell Medical Home at Virginia Commonwealth University, a large urban academic medical center, conducted a telephone survey ("wellness check"was used when we talked to patients) of all known adults with SCD over 19 days in 2020. A staff member confirmed the patient had SCD, asked permission to proceed, then asked about symptoms consistent with COVID-19. At the end of the telephone survey, respondents wer invited to complete an email survey of sickle cell and COVID-19 utilization attitudes (19-33 items, depending on the response pattern, either drawn from the National Health Interview Survey, from the Adult Sickle Cell Quality of Life Measurement quality of care survey, or drafted by the authors), the Sickle Cell Stress Survey-Adult (SCSS-A, a 10-item previously validated survey), and anxiety and depression (PHQ9 of the PRIME-MD). Results Of 622 adults approached by phone call, 353 responded to the following yes/no screening questions regarding the prior 14 days: fever over 100 F 0/353 (0.00%); cough 3/353(0.01%); difficulty breathing 0/353(0.00%); unexplained shortness of breath 2/353(0.01%); sore throat 2/353 (0.01%); unexplained muscle soreness 2/353(0.01%);contact with anyone who tested positive for COVID-19 2/353(0.01%); testing for COVID 19 6/353(0.02%). For QI purposes, we set a threshold of three or more COVID-associated symptoms or the presence of fever as criteria requiring intense telephone or in-person staff monitoring for the following week. Only three patients met criteria. A total of 219/353 had email surveys sent. Of 63 patients (28.8%) who returned email surveys by June 10, 2020, 35.9% had already managed a "pain attack" at home 4 or more times in the prior 12 months, and 45.5% of these said their bad ER experiences were very or somewhat important in that decision. In the prior 14 days, although 30/64 reported a crisis for at least one day, only 4/64 had visited the Emergency Department for pain. On a 0-10 scale, 21/61 patients endorsed "0" for worry that they would be COVID-infected by going for medical care (weighted mean 3.9), but 18/59 endorsed "10" for worry they were more at risk of COVID because of SCD (weighted mean 6.31), and 22/60 endorsed "10" for worry they would fare worse than others if COVID infected (weighted mean 6.97). Many patients forwent "needed" care (16/62) or delayed "needed" care by at least a day (36/61). Eleven patients met criteria for moderately severe to severe depression on the PHQ-9, and 28/63 somewhat or strongly agreed with the statement "death is always on the back of my mind" on the SCSS-A. Conclusions In adolescents and adults with SCD, many were already reticent to come to the ED for pain, but a significant portion reported delays or avoidance of needed care during the early stages of the US COVID pandemic, and few reported using the ED despite over half reporting at least one crisis day in 14. Patients nonetheless reported very few COVID-associated symptoms. Fears of COVID infection/susceptibility may limit visits for needed sickle cell care among adults. Acknowledgements: Mica Ferlis RN, FNP, Caitlin McManus, RN, FNP, Emily Sushko, RN, FNP, Justin West, RN, Kate Osborne, RN, Stefani Vaughan-Sams, Marla Brannon, BS, Nakeiya Williams, BS Disclosures Smith: GlycoMimetics, Inc.: Consultancy; Emmaeus Pharmaceuticals, Inc.: Consultancy; Novartis, Inc.: Consultancy, Other: Investigator, Research Funding; Global Blood Therapeutics, Inc.: Consultancy, Research Funding; Shire, Inc.: Other: Investigator, Research Funding; NHLBI: Research Funding; Patient-Centered Outcomes Research Institute: Other: Investigator, Research Funding; Health Resources and Services Administration: Other: Investigator, Research Funding; Incyte: Other: Investigator; Pfizer: Consultancy; Ironwood: Consultancy; Novo Nordisk: Consultancy; Imara: Research Funding; Shire: Research Funding.

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