Age-related emergency department reliance (EDR) and health care resource utilization in patients with sickle cell disease (SCD)

Background: Sickle Cell Disease (SCD) is a severe, potentially life threatening hereditary hemoglobin disorder requiring multidisciplinary care including screening, prevention, health education and management of acute and chronic complications. [ME Houwing et al, Blood Rev 2019] Although it affects millions of people throughout the world mainly individuals of African descent, Mediterranean (Caucasian) and Asiatic population, global migration from regions where the disease is endemic are changing its geographical distribution with a significant impact on patient survival, quality of life and costs for health systems requiring new treatment and preventive approaches. Data on epidemiological and clinical profiles of SCD have deeply changed also in Italy, a country with a high prevalence of hemoglobinopathies and where SCD is already present in the native population, due to an increasing number of immigrants from countries with high disease prevalence. Currently, approximately 2,000 SCD patients live in Italy. The creation of an Italian National Registry of Thalassemia and Hemoglobinopathies - was approved in 2017 thanks to a strong joint initiative of the Italian Society of Thalassemias and Hemoglobinopathies (SITE) and national patients associations. However the Registry is not yet completed, thus, the information currently available is very limited. [G Russo et al, Orphanet J Rare Dis. 2019] The Italian National Health Service is organized in Regions and Local Health Units (LHU). Each LHU reimburses health providers (eg, public and private hospital, general practitioners, outpatient services providers) for health assistance provided to citizens referring to the LHU, and uses specific databases to track the health assistance provided containing useful data to describe the type of assistance (eg, patient beneficiary, date of assistance) and to calculate the related charge. The main purpose of GREATalyS trial (CSEG101AIT01) is to collect data on SCD which may be representative of the national picture to better understand the burden of illness in terms of patient population, key disease features and resources consumption in Italy. Methods: Observational retrospective analyses will be carried out by integrating administrative databases for healthcare resources consumption (pharmaceuticals database, hospitalizations database, diagnostic tests and specialist visits database) from a sample of Italian Regions and LHUs, geographically distributed across the National territory (balanced between regions and number of covered residents). A representative sample of the whole national landscape through the involvement of approximately 11 LHUs and Regions will allow capture of approximately 23 million covered residents, representing about 38% of the entire Italian population. Patient Socio-Demographic characteristics (age, gender), all hospitalizations (SCD related and not related), previous SCD treatment type, co-morbidity profiles, patient treatment patterns, resources use and health services cost will be collected and analyzed. Anonymized patient data will be extracted into the Hospitalization database searching the relevant International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM codes). All analyses will be performed by STATA SE, version 12.0. The Local Ethics Committee of each participating Region/LHU has been notified about the study. Objectives: Composite objectives will collect both epidemiological and burden of illness data. Primary study objective is to estimate SCD prevalence and incidence rate from January 2010 to December 2018. Key secondary objectives include description of demographic and clinical characteristics, therapeutic pathways, health care resource use and direct costs (derived from health care resource utilization in term of drug treatments, diagnostic tests, specialist visits and hospitalizations) for patients affected by SCD. Conclusions: GREATalyS is to our knowledge the first SCD real world evidence study in Italy leveraging National Health System administrative databases to collect epidemiological and burden of illness data, and represents a useful health assessment model to better understand the evolving scenario in Italy, a country where SCD is becoming an emerging health problem. Figure Disclosures Castiglioni: Novartis Farma SpA: Employment. Condorelli:Novartis Farma SpA: Employment. Amore:Novartis Farma SpA: Employment. Perrone:CliCon srl: Employment. Alessandrini:CliCon srl: Employment. Veronesi:CliCon srl: Employment. Degli Esposti:CliCon srl: Employment. Premoli:Novartis Farma SpA: Employment. Fiocchi:Novartis Farma SpA: Employment.

Download Full-text

Age-Related Emergency Department Reliance and Healthcare Resource Utilization in Patients with Sickle Cell Disease

Blood ◽

10.1182/blood.v120.21.475.475 ◽

2012 ◽

Vol 120 (21) ◽

pp. 475-475

Author(s):

Morey A. Blinder ◽

Francis Vekeman ◽

Medha Sasane ◽

Alex Trahey ◽

Carole Paley ◽

...

Keyword(s):

Emergency Department ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Healthcare Costs ◽

Research Funding ◽

Transition Period ◽

Cell Disease ◽

Adult Care ◽

Age Related ◽

Ed Visits

Abstract Abstract 475 Introduction: For sickle cell disease (SCD) patients (pts), inadequate care during pediatric to adult transition may result in increased emergency department (ED) utilization. Emergency department reliance (EDR: total ED visits/total ambulatory [outpatient + ED] visits) identifies the proportion of ED visits in relation to all ambulatory visits and differentiates between acute episodic ED users from those who may not have adequate access to outpatient care. The aim of this study is to investigate age-related patterns of EDR and associated healthcare costs in pediatric SCD pts and those transitioning from pediatric to adult care. Methods: State Medicaid data from FL (1998–2009), NJ (1996–2009), MO (1997–2010), IA (1998–2010), and KS (2001–2009) were used for this study. Pts with ≥2 SCD diagnoses (ICD-9 282.6x) and ≥1 blood transfusion were included in the analysis. Pts were followed for as long as they were enrolled in Medicaid. Quarterly rates of outpatient visits, ED visits, EDR, SCD complications associated with ED visits, and ED visits resulting in hospitalization were evaluated. Total healthcare costs were calculated and stratified by outpatient (OP), inpatient (IP), ED, and prescription drug (Rx). SCD complications included pain, stroke, leg ulcers, avascular necrosis, infections, as well as pulmonary, renal, and cardiovascular events. Based on published thresholds, high EDR was defined as >0.33. A logistic regression model was used to assess associations between high EDR and transition age (<18 vs. ≥18 years [yrs]), transfusions, hydroxyurea use, and SCD complications. Other covariates included transfusions during the previous quarter, other relevant medications (e.g.: pain medication, diuretics, anticoagulants), comorbidities (e.g.: hypertension, myocardial infarction, liver disease), and, serving as proxies for overall health status, the frequency of OP, IP, and ED visits during the previous quarter. Regressions analyses were also used to calculate adjusted costs differences between pts with high vs. low EDR. Findings: A total of 3,208 pts were included (FL: 1,550, NJ: 992, MO: 489, KS: 121, IA: 56) in the study. Each pt was observed for an average (SD) of 6.0 (3.1) yrs. Average ED visits/quarter increased from 0.76 to 2.29 between age 15 and 24, reaching a peak of 2.9 at age 36 (Figure 1). Regardless of age, the most common SCD complications associated with ED visits were pain, infection, and pneumonia. Beginning at age 15, EDR rose from 0.17 to reach 0.29 at age 22, and remained high throughout adulthood. The quarterly rate of ED visits resulting in hospitalizations followed a similar pattern. Regression analysis indicated that pts were more likely to have high EDR during the post-transition period (≥18 yrs old, odds ratio [OR]: 2.38, p<0.001) and when experiencing an SCD complication (OR: 4.18, p<0.001). Pts with high EDR incurred statistically significantly higher inpatient and ED costs, resulting in significantly higher total costs (high vs. low EDR, unadjusted costs difference, OP: -$441, p<.001; IP: $7,427, p<.001; ED: $442, p<.001; Rx: -$447, p=0.182; total: $7,376, p<.001 [Table 1]; adjusted costs difference, OP: -$285; IP: $3,485; ED: $120; Rx: -$91; total: $3,086, p<.001 for all). Conclusion: Compared to children, pts transitioning to adulthood relied more on ED for their care. Moreover, pts with high EDR incurred more frequent hospitalizations and significantly higher healthcare costs, highlighting the need to improve transition related support including better access to primary care and increased engagement with SCD patients. Disclosures: Blinder: Novartis Pharmaceuticals: Consultancy, Research Funding. Vekeman:Novartis Pharmaceuticals: Research Funding. Sasane:Novartis Pharmaceuticals: Employment. Trahey:Novartis Pharmaceuticals: Research Funding. Paley:Novartis Pharmaceuticals: Employment. Magestro:Novartis Pharmaceuticals: Employment. Duh:Novartis Pharmaceuticals: Research Funding.

Download Full-text

Communalism Moderates the Association Between Racial Centrality and Emergency Department Use for Sickle Cell Disease Pain

Journal of Black Psychology ◽

10.1177/0095798417696785 ◽

2017 ◽

Vol 43 (7) ◽

pp. 659-668 ◽

Cited By ~ 1

Author(s):

Shawn M. Bediako ◽

Chey Harris

Keyword(s):

Health Care ◽

Emergency Department ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Health Care Use ◽

Inverse Association ◽

Cell Disease ◽

Emergency Department Use ◽

Blood Disorder ◽

Racial Centrality

Sickle cell disease (SCD) is a genetic blood disorder that predominantly affects people of African descent. However, there is limited information on how social and cultural contexts affect SCD-related health care use. We explored whether communalism moderated the relation between racial centrality and emergency department use for SCD pain in a sample of 62 adults who were seen at a comprehensive clinic. Bivariate analyses showed a significant correlation between racial centrality and emergency department use ( r = −.30, p = .02). Pain-adjusted regression analyses indicated a moderating effect of communalism ( b = .77, p < .01) such that an inverse association between racial centrality and emergency department use was observed only at mean and low levels of communalism. Additional studies are needed to replicate these findings with larger samples. There is also a need for further studies that elucidate the role of culturally centered coping strategies on health care use in this patient group.

Download Full-text

All-Cause Health Care Resource Utilization in Individuals with Sickle Cell Disease

Blood ◽

10.1182/blood.v126.23.5582.5582 ◽

2015 ◽

Vol 126 (23) ◽

pp. 5582-5582

Author(s):

Jigar Rajpura ◽

Joseph Thomas

Keyword(s):

Health Care ◽

Sickle Cell Disease ◽

Emergency Room ◽

Sickle Cell ◽

Health Care Resource ◽

Emergency Room Visits ◽

Cell Disease ◽

Term Care ◽

Outpatient Visits ◽

Hospital Days

Abstract Introduction Clinical manifestations of Sickle Cell Disease (SCD) range from frequent fatigue and anemia to severe complications involving multiple organs. We estimated all cause health care resource utilization in individuals with SCD as compared to individuals without SCD. Methods Data from the Truven multi-state Medicaid claims database were used for all analyses. Sample inclusion criteria was being enrolled in covered health plan from January 1, 2012 through December 31, 2012. A cohort of individuals with SCD was identified based on having at least one inpatient or two or more outpatient claims with ICD-9-CM codes for sickle-cell thalassemia without crisis (282.41), sickle-cell thalassemia with crisis (282.42), Sickle-cell disease, unspecified (282.60), Sickle-cell-S disease without crisis (282.61), Sickle-Cell-S disease with crisis (282.62), Sickle-cell-C disease without crisis (282.63), Sickle-cell-C disease with crisis (282.64), other sickle-cell disease without crisis (282.68), or other sickle-cell disease with crisis (282.69). From the continuously enrolled individuals, a cohort of individuals without SCD was identified by matching individuals with SCD one-to-one on age, gender, and ethnicity. Means and 95 percent confidence intervals were calculated for, number of hospitalizations, hospital days, long term care visits, long term care days, emergency room visits, and outpatient visits. Wilcoxon Mann-Whitney test was employed to assess differences in health care resource utilizations in individuals with and without SCD. Results Among 5,136,748 individuals covered in the study period, 8,652 individuals with SCD were identified and matched to 8,652 individuals without SCD. Majorities of the study sample were black (74%), female (54%), and under 24 years old (64%). Mean annual hospitalizations among individuals with SCD were 1.39 (95 percent C.I.: 1.3 to 1.4, <0.001) as compared to 0.10 (95 percent C.I.: 0.09 to 0.1, p<0.001) hospitalizations in persons without SCD. Mean annual outpatient visits in individuals with SCD were 24.7 (95 percent C.I.: 23.9 to 25.5, p<0.001) as compared to 14.18 (95 percent C.I.: 13.4 to 14.9, p<0.001) outpatient visits in persons without SCD, and, mean annual emergency room visits in individuals with SCD were 3.71 (95 percent C.I.: 3.5 to 3.9, p<0.001) as compared to 0.89 (95 percent C.I.: 0.8 to 0.9, p<0.001) emergency room visits in persons without SCD. Conclusions SCD was associated with higher annual hospitalizations, hospital days, outpatient visits and emergency room visits as compared to individuals without SCD. Disclosures Rajpura: Pfizer Inc.: Research Funding. Thomas:Pfizer Inc.: Research Funding.

Download Full-text

Examining the Role of Sickle Cell Disease Patients As Teachers in the Emergency Department: Patient Directed Physician Education

Blood ◽

10.1182/blood-2018-99-112199 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 4722-4722

Author(s):

Zachary Liederman ◽

Naa Kwarley Quartey ◽

Richard Ward ◽

Janet Papadakos

Keyword(s):

Health Care ◽

Emergency Department ◽

Sickle Cell Disease ◽

Qualitative Analysis ◽

Sickle Cell ◽

Physician Education ◽

Study Patient ◽

Successful Implementation ◽

Cell Disease ◽

Care Plans

Abstract Background: Sickle Cell Disease (SCD) patients are amongst the most frequent utilizers of the emergency department (ED) for acute vaso-occlusive pain episodes ("crisis"). Unfortunately, ED SCD care often fails to meet guideline recommendations. This results in preventable morbidity and mortality as well as substantial resource utilization. Current care interventions across multiple domains have not led to sustained improvements, likely due in part to negative attitudes and beliefs among health care providers (HCP). Novel mechanisms of physician education are required to improve outcomes. An emerging method of education in SCD is the use of patients as "just in time" teachers. We refer to this as Patient Directed Physician Education (PDPE) and define it as a broad range of activities in which patients relay actionable information to HCPs in the clinical setting. While there is a growing body of research supporting patients as teachers, no group has specifically examined point of care PDPE in a SCD population. Objective: This study seeks to understand the current use and feasibility of SCD PDPE in the ED. Methods: This is a multi-centered, prospective descriptive qualitative design with semi-structured, audio taped individual interviews. SCD patients and ED physicians across Ontario, Canada were recruited to participate in the study through purposeful sampling. Qualitative analysis was performed using phenomenological inquiry, which encompasses qualitative approaches to inductively and holistically understand a human phenomenon (i.e. teaching and learning in sickle cell disease) in a context specific setting. Results: In total, 11 patients and 8 physicians participated in the study. Patient ages ranged from 21-67 and physician years in practice ranged from 3-21. The patient group predominately consisted of female Black Canadians (81%) while the physician group was mainly Caucasian males (63%) but did include representation from other ethnicities. There was significant variability in both self-described disease severity (patients) and frequency of SCD exposure (physicians). Both groups assessed themselves as having good to excellent SCD general knowledge or clinical acumen respectively. Within the qualitative analysis both groups responded favourably to PDPE and expressed confidence in its feasibility and ability to improve ED care. Barriers to the implementation of PDPE were expressed across three major domains; 1) patient factors, 2) health care worker factors, and 3) health care system factors. The ability of patients to present reliable health information was highlighted as a key factor in the success of PDPE by both groups. However, physicians and patients had strikingly different perspectives towards the inherent challenges. Patients identified triage delays and difficulty speaking due to intractable pain as the major barriers to shared decision making. Conversely, physicians largely did not appreciate these elements of the vaso-occlusive pain episode experience and instead expressed concerns regarding patient credibility, particularly in the context of high dose opiates. Overt racism or the perception of patient as "drug seeker" were not identified as major themes from either group. There was consensus towards written patient care plans, corroborating electronic health records, and collaboration from SCD experts as mechanisms to bridge the SCD patient/ED physician divide and facilitate PDPE. In addition, despite not being directly involved in PDPE, nurses experienced in SCD management were consistently noted to be instrumental in supporting the patient-physician interaction. Conclusions: Patient directed physician education is a feasible and novel SCD care innovation with support from both patients and ED physicians. Successful implementation will require credible educational adjuncts (e.g. patient pocket cards, care plans) and support from ED nurses and SCD experts. Our findings will serve as part of a continuum of research to engage patients as partners in improving SCD knowledge and care outcomes. Disclosures No relevant conflicts of interest to declare.

Download Full-text

PRO3 SUCCESSOR STUDY: TREATMENT AND HEALTH CARE RESOURCE UTILIZATION BY SICKLE CELL PATIENTS WHO PARTICIPATED IN THE SUSTAIN STUDY IN THE UNITED STATES

Value in Health ◽

10.1016/j.jval.2019.04.1637 ◽

2019 ◽

Vol 22 ◽

pp. S335 ◽

Cited By ~ 1

Author(s):

N. Shah ◽

R. Boccia ◽

W.K. Kraft ◽

B.M. Hardesty ◽

J. Paulose ◽

...

Keyword(s):

United States ◽

Health Care ◽

Resource Utilization ◽

Sickle Cell ◽

The United States ◽

Health Care Resource ◽

Health Care Resource Utilization

Download Full-text

Episodes of High Emergency Department Utilization Among a Cohort of Persons Living with Sickle Cell Disease

Blood ◽

10.1182/blood-2018-159 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 159-159

Author(s):

Susan T Paulukonis ◽

Eric Roberts ◽

Ron Brathwaite ◽

Ted Wun ◽

Mary M Hulihan

Keyword(s):

Health Care ◽

Emergency Department ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Research Funding ◽

Case Definition ◽

Inpatient Stay ◽

Cell Disease ◽

One Year

Abstract Introduction: Previous research has shown that persons living with sickle cell disease (SCD) are at risk for frequent emergency department (ED) encounters, either with or without an associated inpatient stay. The disease manifests as acute onset vaso-occlusive crises or other severe and unpredictable complications that require immediate care. However, day hospital or other appropriate care settings to manage these health care events are not available to most of the population with SCD. Previous observations suggest that-while ED usage is high overall for this population-this usage is also episodic, with periods of high use interspersed with relatively low usage. We here seek to characterize both high-use and quiescent periods among patients seen in California non-federal hospitals over a 12-year period. Methods: The California Sickle Cell Data Collection project is a statewide effort to use a wide range of administrative, clinical, and other data sources to describe the population living with SCD, their health outcomes, and health care utilization patterns. The data here include 2005-2016 inpatient encounters and ED encounters (with or without an associated inpatient stay) linked by patient identifiers across data set and year. A validated case definition that suggests a high probability of a true SCD 'case' was applied: three or more occurrences of a SCD specific International Classification of Disease Code (version 9 or 10, depending on the year) within any 5 year period between 2005-2016. Only patients who met this case definition and had one year or more of follow-up time in the cohort were included in these analyses. We tabulated the numbers of encounters (inpatient and ED) for each patient for non-overlapping 4-week periods and used Poisson mixture models to evaluate whether encounter frequency could be characterized as a mixture of one or more discrete distributions. Based on these findings, we examined the timing and duration of periods of ED utilization for patients over the course of the study. Quiescent periods are defined as lengths of time in which a person has zero or near zero encounters in ED or inpatient settings. Occasional and high use periods of ED utilization are defined quantitatively by the model (as below). Results: There were 5,090 patients meeting the case definition with one year or more of time in follow up. Patients were followed for a median of 9.8 years (range 1.0 to 11.0). There were 94,196 ED encounters without and 59,064 ED encounters with an associated inpatient stay. A 3-component model best combined predictive power, parsimony, and clinical relevance (Figure 1, upper left), including quiescent periods (mean 0.09 encounters; 88.8% of 4-week periods); occasional-use periods (mean 1.28encounters; 10.8% of 4-week periods); and high-use periods (mean 7.48 encounters; 0.5% of 4-week periods). All but two of the subjects experienced at least one quiescent period during the study, 75.9% experienced at least one occasional-use period, and 8.0% experienced at least one high-use period. Spells of occasional- or high-use lasted a median of 8 weeks regardless of patient age, and 3.6% of these included at least some very high-use. Median lengths of quiescent periods were 24 weeks for patients aged less than 20 years, 16 weeks for those 20 years of age and older. Examples of distribution of utilization over time by certain patients are shown in Figure 1, upper right and both lower panels. Conclusions: The majority of patients with sickle cell disease experience discrete periods during which ED and inpatient hospital encounters are not uncommon, separated by somewhat longer periods with few-to-no encounters. The experiences of -8.0% of patients further include periods during which encounters were very frequent. Patients aged 20 years and older are more likely to experience these high frequency episodes. Further research is planned to identify whether particular health related events or patient characteristics are associated with these high-utilization spells. Figure 1 Figure 1. Disclosures Paulukonis: Bioverativ Inc.: Research Funding; Pfizer Inc.: Research Funding; Global Blood Therapeutics Inc.: Research Funding.

Download Full-text

A Successful Model for Adult Emergency Medicine Protocol Implementation for Sickle Cell Disease

Blood ◽

10.1182/blood.v126.23.2078.2078 ◽

2015 ◽

Vol 126 (23) ◽

pp. 2078-2078

Author(s):

Payal C. Desai ◽

Luca Delatore ◽

Deborah Hanes ◽

Amy Rettig ◽

Miranda Gill ◽

...

Keyword(s):

Health Care ◽

Emergency Department ◽

Sickle Cell Disease ◽

Length Of Stay ◽

Health Care Utilization ◽

Sickle Cell ◽

The United States ◽

Care Utilization ◽

Cell Disease ◽

Protocol Implementation

Abstract Introduction: Sickle Cell Disease (SCD) affects approximately 1 in 350 African American newborn infants each year in the United States and 70,000-100,000 people in the United States. Vaso-occlusive pain crisis is the most common complication that results in patients seeking emergency care for sickle cell disease. In the US in 2006, an estimated 232,381 emergency department (ED) visits were related to sickle cell disease, which resulted in approximately $356 million of ED health care costs and $2.6 billion of combined ED and inpatient costs. Initial pediatric data suggests that time to opiate initiation effectively decreased the total ED length of stay, and total intravenous opiates. While adult ED protocols have been implemented, results on time to first opiate as well as health care utilization has been variable. Methods: A multidisciplinary quality improvement group was formed to improve emergency room department care delivery for patients with sickle cell disease. The existing NIH 2014 sickle cell guideline and Tanabe protocol was modified to include individualized pain plans (Figure 1). The primary goal was defined as average time to first opiate of < 60 minutes. The secondary goal was to improve long term health care utilization as measures by length of ED stay and readmission rates for patients with sickle cell disease. The data was compared to a year prior to protocol implementation given the seasonal variations observed in patient admissions and encounter volumes. For reporting, those patients that require a toxicology screen prior to opiate administration were excluded from the data analysis. Results: There were a total of 352 encounters from 102 unique patients that occurred time of protocol initiation (January 2015-June 2015). The average time to first opiate in January 2014 was 170 min and June 2014 was 166min. After protocol implementation, the average time to first opiate in January 2015 was 123 min and June 2015 62 min (Figure 2). The readmission rate compared to May and June 2014 was decreased by 43% and 20% in May and June 2015, respectively. The average length of ED stay decreased from 9.4 hrs in June 2014 to 5.0 hrs in June 2015 (Figure 3). Conclusion: With a collaborative multi-disciplinary approach, successful ED protocol implementation is feasible. The collaboration can lead to better patient care with improvement in time to analgesia. The model may also contribute to reduction in health care utilization. Figure 1. ED Pain Protocol Algorithm Figure 1. ED Pain Protocol Algorithm Figure 2. Time to First Opiate (mins) Figure 2. Time to First Opiate (mins) Figure 3. Length of Stay in the Emergency Department (Hrs) Figure 3. Length of Stay in the Emergency Department (Hrs) Disclosures Desai: Pfizer: Consultancy.

Download Full-text