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.

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 Using Project Echo Telementoring to Improve Sickle Cell Disease Care in the Midwest

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5923-5923
Author(s):  
Lisa Marie Shook ◽  
Christina Bennett Farrell ◽  
Karen A. Kalinyak ◽  
Stephen C Nelson ◽  
Brandon M. Hardesty ◽  
...  
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Sickle Cell ◽  
Research Funding ◽  
Primary Care Providers ◽  
Healthcare Outcomes ◽  
Care Providers ◽  
Cell Disease ◽  
Project Echo

Abstract Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, funded by the Health Resources and Services Administration Treatment Demonstration Project (HRSA U1EMC27863), established to improve outcomes for individuals with sickle cell disease (SCD) living in Indiana, Illinois, Michigan, Minnesota, Ohio and Wisconsin. The STORM network is led by pediatric and adult hematologists who coordinate network activities in each state, along with a Regional Coordinating Center that organizes efforts throughout the Midwest. The goal of the STORM network is to increase the number of pediatric and adult primary care providers (PCP) who are knowledgeable about the management and treatment of SCD, and who are willing to prescribe and manage hydroxyurea therapy as a means to improve medical care for the approximately 15,000 individuals living with SCD in the Midwest. One PCP engagement strategy that has been implemented to increase provider knowledge in the region is replication of the Project ECHOTM (Extension for Community Healthcare Outcomes) telementoring model. Project ECHO was developed by the University of New Mexico to utilize low-cost, high-impact video technology to link expert inter-disciplinary specialist teams with primary care providers to improve management of chronic diseases. This guided practice telementoring model delivers complex specialty medical care to underserved areas, reduces health disparities, and increases workforce capacity. Project ECHO's methodology is based on 1) using telehealth technology to build healthcare resources where they are scarce; 2) sharing best practices to reduce variation in clinical care; 3) utilizing practice-based learning to develop specialty expertise among providers; and 4) monitoring and evaluating provider outcomes. Project ECHO has demonstrated improved healthcare outcomes in Hepatitis C and several other chronic diseases, and is now being piloted by STORM to test its feasibility and applicability for SCD by using a regional approach with CME accreditation. STORM network site physician leads in each state are recruiting multi-disciplinary primary care teams to participate as "spokes" in monthly SCD TeleECHO clinics. The "hub" led by the STORM Regional Coordinating Center, located at Cincinnati Children's Hospital Medical Center, coordinates implementation and evaluation of the telementoring clinics, delivered through monthly teaching sessions. STORM TeleECHO participants log onto an internet-based virtual meeting site, using a webcam to interact during the session. STORM TeleECHO clinics include brief didactic presentations from nationally-recognized SCD content experts with topics and curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines released in 2014. TeleECHO teaching clinics also include 1-2 de-identified, HIPAA protected case discussions (pediatric and adult) presented by providers who would like medical and psychosocial feedback on management of challenging clinical scenarios. Providers participating in the STORM TeleECHO complete an initial survey assessing knowledge and comfort levels, practice behaviors (including hydroxyurea prescribing practices) and clinic demographics. Satisfaction surveys are sent to participants after each session as part of the CME-credit evaluation. Follow-up surveys at 6 months and 1 year will assess satisfaction, knowledge, comfort level and changes in practice. STORM's TeleECHO was launched in March 2016. Preliminary data indicate an interest in STORM TeleECHO teaching sessions by both pediatric and adult providers across the Midwest region. Future efforts will expand the network to more PCPs in the region, while improving the applicability and utility of STORM TeleECHO in SCD through provider assessment. Disclosures Ware: Global Blood Therapeutics: Consultancy; Biomedomics: Research Funding; Bristol Myers Squibb: Research Funding; Addmedica: Research Funding; Nova Laboratories: Consultancy; Bayer Pharmaceuticals: Consultancy.

Risk Factors for 30-Day Re-Admission in Adults with Sickle Cell Disease

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 4086-4086
Author(s):  
Max A. Brodsky ◽  
Brandi L. McClain ◽  
Jeannie Byrd ◽  
Dionna O. Roberts ◽  
Brittany Danielle Melvin ◽  
...  
Keyword(s):  
Risk Factors ◽  
Primary Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Provider ◽  
Primary Care Provider ◽  
Odds Ratio ◽  
Discharge Planning ◽  
Modifiable Risk Factors ◽  
Cell Disease

Abstract Background: Re-admission to the hospital within 30 days is a measure for quality care and a point of emphasis for reducing health care costs in individuals with chronic disease. Potentially modifiable risk factors for 30 day re-admission in children with sickle cell disease (SCD) includes not being seen in the SCD clinic within 30-days of discharge (OR 7.7, 95% CI 2.4–24.4), 3 or more admissions in the previous 12 months (OR 7.3, 95% CI 2.8–18.9) and co-morbid asthma (OR 2.9, 95% CI 1.2–7.3) (Pediatr Blood Cancer. 2009 Apr;52(4):481-5). Limited data exists regarding potentially modifiable risk factors for 30-day re-admission in adults with SCD. The primary objective of this study was to define modifiable risk factors for 30-day re-admission in adults with SCD, leading to a prospective intervention study to decrease re-admission rates. Procedure: At a tertiary care center, we performed a retrospective analysis of the medical records, from 2010 to 2013, to determine risk factors for 30-day re-admission in adults with SCD. Initial admission was defined as the first admission associated with uncomplicated vaso-occlusive pain episode in each focus year (2011- 2013). To decrease bias associated with multiple admissions from the same individual, the first admission for vaso-occlusive pain in each year was evaluated as the index admission for each record. Cases and controls were defined as adults with SCD initially admitted for pain and subsequently re-admitted to the hospital within 30 days of the initial admission. A multi-variable logistic regression analysis was performed on seven postulated risk factors. All data was collected and double checked by a single reviewer, and at least 10% of the chart was checked by a medical student for further assurance of accuracy. Results : A total of 158 first admissions and 49 re-admissions (31%) were evaluated. The mean age of the cohort was 30.38 (IQR 13.55 years). The median time to re-admission was 10 days (IQR 19 days). Approximately 50% of the cohort was not evaluated in the outpatient setting by the hematology team within 30 days post-discharge. Upon discharge patients either were not given a follow up appointment (35%) or were given an appointment beyond 30 days of discharge (13%). Only two predictors were significantly associated with re-admission within 30 days: not having a primary care provider listed in the electronic medical record (odds ratio 0.35, 95% CI 0.146-0.858; p = 0.022) and the number of hospital admissions due to vaso-occlusive pain in the prior year (odds ratio 1.28, 95% confidence interval 1.15-1.42; p < 0.001), table and figure below. Five covariates were not significantly associated with re-admission within 30 days: age (odds ratio 0.982, 95% CI 0.94-1.02; p = 0.369), sex (odds ratio 0.715, 95% CI 0.28-1.81, p =0.481), hemoglobin phenotype (odds ratio 0.50, 95% CI 0.19-1.287; p = 0.15), median lifetime oxygen saturation (odds ratio 0.892, 95% CI 0.75-1.05; p = .186), and presence of government insurance (odds ratio 1.90, 95% CI 0.67-5.37; p =0.222). Conclusions: Not having a primary care provider listed in the electronic medical record and multiple admissions in the prior year are potentially modifiable risk factors for re-admission within 30 days in adults with SCD. In addition, discharge planning with a hematology visit scheduled within a week of discharge may also impact the 30-day re-admission rate. We recently introduced a strategy focused on improved discharge planning, ensuring a primary care provider for every adult patient with SCD and targeted therapeutic intervention for those with high admissions. Table: Multivariable analysis of risk factors for 30-day re-admission in adults with sickle cell disease over a course of 3 years. A total of 158 admissions were evaluated with 31% being re-admissions within 30 days. Sig. Odds ratio 95% C.I.for EXP(B) Lower Upper Age Upon Admission to the Hospital 0.369 0.982 0.944 1.021 Sex 0.481 0.715 0.281 1.817 Hemoglobin Phenotype 0.152 0.504 0.197 1.287 Median Lifetime Oxygen Saturation Level 0.186 0.892 0.753 1.057 Primary Care Provider 0.022 0.354 0.146 0.858 Government Insurance 0.222 1.907 0.676 5.378 Number of Hospitalizations Due to Vaso-Occlusive Pain in the Prior Year 0.000 1.278 1.148 1.422 Figure. A graph depicting the predicted probablity of a re-admission within 30 days in indivdiuals with and without hospitalization versus the number of hospitalizations in the prior years. Figure. A graph depicting the predicted probablity of a re-admission within 30 days in indivdiuals with and without hospitalization versus the number of hospitalizations in the prior years. Disclosures No relevant conflicts of interest to declare.

scholarly journals Clinical Outcomes and Healthcare Utilization in Patients with Sickle Cell Disease: A Nationwide Cohort Study of Medicaid Beneficiaries

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 3459-3459
Author(s):  
Rishi J Desai ◽  
Mufaddal Mahesri ◽  
Raisa Levin ◽  
Denise Globe ◽  
Krista McKerracher ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Research Funding ◽  
Cell Disease ◽  
Advisory Committees ◽  
Risk Of Mortality ◽  
Increased Risk ◽  
Ed Visits ◽  
Event Rates

Introduction: There is limited contemporary evidence on clinical outcomes and healthcare use in sickle-cell disease (SCD) patients enrolled in US Medicaid. We aimed to provide contemporary estimates for rates of vaso-occlusive crises (VOC), mortality, and healthcare resource utilization (HRU) in SCD patients enrolled in US Medicaid. Methods: We conducted a cohort study using nationwide Medicaid insurance claims data (2000-2013). Patients were included based on ≥1 inpatient or ≥2 outpatient HbSS SCD diagnosis claims after 365 days continuous enrollment in Medicaid (or continuous eligibility since birth if age at diagnosis is &lt;1 year). Patients were followed until Medicaid disenrollment, death, bone marrow transplant, or end of data availability (December 31, 2013). Outcomes included frequency of VOCs, event rates of HRU including emergency department (ED) visits, hospitalizations, outpatient visits, and blood transfusions, and all-cause mortality during the follow-up period. All outcomes were reported as annualized event rates (with 95% confidence intervals). VOCs were stratified by age-group (&lt;1, 2-6, 7-12, 13-18, 19-35, 35+ years), VOCs at baseline (&lt;2, 2-4, &gt;=5), race (African American or not), and sex. The impact of VOCs on the risk of mortality was analyzed using an extended multivariable Cox model with VOCs modeled as time-varying and updated annually. Results: A total of 44,033 SCD patients were included in the analysis; 47% were female, 82% were African American, and a mean (SD) age of 15.7 (13.6). The average VOC rate was 3.71 (95% CI: 3.70-3.72) VOCs per person-year over an average follow-up period of 4.3 years. The rate of VOCs was substantially higher among patients aged 19-35 years and those with a higher VOC frequency at baseline (Table 1). Overall, the event rates (95%CI) per person year for other HRU outcomes were: 2.97 (2.97-2.98) ED visits, 2.39 (2.38-2.40) hospitalizations, 5.80 (5.79-5.81) outpatient visits, and 0.91 (95%CI: 0.90-0.91) blood transfusions. The mortality rate was 1.13 (95%CI: 1.08-1.17) events per 100 person-years overall, with the highest rate being 4.91 (95%CI: 4.58-5.25) events per 100 person-years among patients ≥ 35 years of age. Higher VOC burden in the preceding year was associated with an increased risk mortality: 2-4 VOC vs. 0 or 1 VOC: Hazard Ratio (HR)=1.36 (95%CI: 1.21-1.52); ≥ 5 VOC: HR= 1.56 (95%CI: 1.39-1.75). Conclusion: The burden of SCD in US Medicaid enrollees is substantial, especially during early adulthood, with markedly high rates of VOCs, mortality, and healthcare utilization. A higher VOC rate in the preceding year was associated with an increased risk of mortality suggesting a need for careful management of SCD patients with higher VOC burden. Table 1. Annualized rates of vaso-occlusive crises (VOC) among sickle cell disease patients enrolled in Medicaid. VOC, vaso-occlusive crises; CI, confidence interval. Table 1 Disclosures Desai: Merck: Research Funding; Bayer: Research Funding. Globe:Vertex Pharmaceuticals Incorporated: Employment. McKerracher:CRISPR Therapeutics: Employment. Mutebi:Vertex Pharmaceuticals Incorporated: Employment. Bohn:Bohn Epidemiology: Equity Ownership; Vertex Pharmaceuticals Inc: Consultancy. Achebe:Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Pharmacosmos: Membership on an entity's Board of Directors or advisory committees; Fulcrum Therapeutics: Membership on an entity's Board of Directors or advisory committees; Bluebird Bio: Membership on an entity's Board of Directors or advisory committees. Schneeweiss:Genentech: Research Funding; Boehringer Ingelheim: Research Funding; Aetion, Inc.: Consultancy, Equity Ownership; Whiscon LLC: Consultancy.

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

Blood ◽  
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.

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.

Episodic Patterns of High Emergency Department Utilization Among Sickle Cell Disease Patients

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 316-316
Author(s):  
Susan Paulukonis ◽  
Lisa Feuchtbaum ◽  
Elliott Vichinsky ◽  
Mary Hulihan
Keyword(s):  
Emergency Department ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Surveillance System ◽  
Research Funding ◽  
Cell Disease ◽  
Ed Visits ◽  
High Utilization ◽  
The Mean ◽  
Over Time

Abstract Background: High utilization of emergency department (ED) services among those with sickle cell disease (SCD) compared to the general population and compared to those with other chronic diseases is well documented in the literature. Some reports note that high utilization is episodic. Most analyses address the problem as a consistent one within patients, rather than consistent over time across the patient population but sporadic for patients. Reducing the high rate of ED utilization among patients with SCD requires an understanding of temporal patterns of ED utilization, the consistency of ED utilization over time by patients and the proportion of the population affected at any given time. Methods: CDC has developed the Sickle Cell Data Collection program (SCDC) to conduct state level surveillance in this disease, and to continue and improve upon work begun through the Registry and Surveillance System in Hemoglobinopathies (RuSH). Through SCDC, California has collected ED and hospitalization data for years 2005-2014 on 4,325 people with SCD. A period of high ED utilization among this cohort was defined as three or more ED encounters (either treat and release or admission to the hospital from the ED) for any diagnosis (not only SCD diagnoses) each fewer than 30 days from the prior visit. The start of an episode of high utilization is the date of the first ED encounter; the end is the date of the last eligible ED encounter. All cohort members were divided into categories of utilization using the proportion of time spent in periods of high utilization divided by the total time in cohort. Total time is cohort is defined as the length of time from the earliest appearance in the ED or hospital data 2005-2014 to the latest appearance. The five categories were defined as no episodes of high ED utilization, and approximate quartile groups for those with high ED utilization: 1.1 to 3.0%, 3.1-10.0%, 10.1% or greater. Age categories (pediatric is < 21 years, and adult is 21 years or older) are defined as patient age at close of study (end of 2014) or at death if prior. Patient ID beginning with P is a pediatric, A is adult in the figures. Results: There were 4,325 individuals with 27,694 person years in the cohort (mean 6.4 person years, median 7.6 person years). Sixty-three percent (n=2,715) of the cohort were aged 21 years and older. Forty-five percent, (n=1,955, 513 pediatric and 1,442 adults) had at least one episode of high utilization during the 10 year study for a total of 7,866 episodes of high utilization. Forty-three percent of patients with one or more high utilization episodes were male, and 63% were between the ages of 20 and 50. Nine percent of these high utilizing patients' total time in the cohort was made up of episodes of high utilization. The mean time span from start of episodes of high utilization to end of the episodes was 63.3 days, median 35 days; mean number of ED visits per episode was 9.0, median 4.0. Most episodes of high utilization were brief: 42.2% included just three visits, and 70.7% included five or fewer ED visits. Among these individuals with episodes of high utilization, the mean number of such episodes was 4.0 over the 10 years study period, and the median was 2.0. Most (76.4%) had five or fewer high utilization episodes, and 35.5% had just one (n = 693). Sample utilization patterns, including hospital admissions, are shown in Figure 1. Conclusions: We demonstrate that among individuals with SCD seen in a population-based, statewide surveillance system, periods of high ED utilization are common, but most SCD patients have only a limited number of short episodes of such utilization. We found that high ED utilization is episodic rather than consistent within individuals, and that while the range of time spent in episodes of high utilization varies, few patients are high utilizers of ED services over a long period of time. Statewide surveillance that follows individual patients over time and in different hospital settings and includes ED utilization (including visits not coded as being related to SCD), provides high quality public health information to inform clinicians and healthcare systems in their development of efforts to reduce ED utilization among those living with SCD. Figure 1 Figure 1. Disclosures Paulukonis: Pfizer: Research Funding; Biogen: Research Funding.

Sickle cell disease in children: Update for the primary care provider

1998 ◽  
Vol 3 (6) ◽  
pp. 205-208
Author(s):  
Onyinye C. Onyekwere ◽  
Leslie Hoover ◽  
Renuka Gera ◽  
Roshni Kulkarni ◽  
Ajovi B. Scott-Emuakpor
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Provider ◽  
Primary Care Provider ◽  
Cell Disease

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.

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

Blood ◽  
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.

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