scholarly journals Outpatient Healthcare Utilization and Rates of Co-Management Among Medicaid Patients with Sickle Cell Disease in North Carolina

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4725-4725
Author(s):  
Nirmish Shah ◽  
Christian Douglas ◽  
Emily Bonnabeau ◽  
Nancy Crego ◽  
Marian Earls ◽  
...  

Abstract Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark, often results in end-organ failure, and is associated with early death. Primary care providers (PCP's), hematologists, and co-management between PCP's and hematologists are necessary to facilitate optimal patient outcomes. Due to the wide array of sickle cell related complications, multiple specialists are required to manage patients with SCD. We report outpatient visits per provider specialty type and co-management, for persons with SCD enrolled in Medicaid during a 12-month period in North Carolina. Methods: Medicaid claims data from North Carolina for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) and at least one month of enrollment in Medicaid between March 1, 2016 and February 28, 2017 were examined. Outpatient visits were identified by the current procedural terminology (CPT) code listed on the claim. Each outpatient visit was then categorized into a specialty using the descriptions from the Medicare Provider/Supplier to Healthcare Provider Taxonomy document that matched the billing provider code and the rendering provider code listed on the claim. If the billing provider or rendering provider code was either missing or did not link to a description that was informative, then those visits were placed in the "NULL" category to signify they were unidentifiable. The "Other Specialty" category included those specialty visits that were either not historically associated with SCD care (such as infectious disease) or occurred ≤1% of all specialty visits (such as dermatology or rheumatology), and excluding SCD specialists, general nurse practitioner and physician assistant visits. Additionally, each outpatient visit type was reviewed by the team and categorized into three broad categories: PCP (including pediatrician), hematologist (including pediatric hematologists), and non-hematology specialty type. An acute care specialty visit (CPT code) occurred outside the emergency department and was defined as a non-PCP and non-hematologist visit that we were unable to further determine specialty type. A minimum of one PCP and one hematologist visit/patient during the study period was required to meet the definition of co-management. A fourth category of provider type (nurse practitioner or physician's assistant) was added whenever we were unable to determine if the NP or PA provided primary care, hematology, or other specialty care. These visits were not included in calculation of co-management. Descriptive statistics were used to report findings. Results: 2850 patients [58% female, mean (SD) age - 23 (16)] were included in the cohort. Eighty-six percent of the sample was enrolled in Medicaid for a minimum of 10 months. Table 1 reports the number of visits, and visits/patient for each category of provider type. Patients had 2.96 (SD 3.76) PCP visits per patient and only 1.28 (SD 2.49) hematology visits per patient. Although there were a large number of PCP and hematology visits overall, only 34% of the cohort met the definition for being co-managed. Table 2 reports the wide array of non-hematology specialty visits by type. On average, patients had nearly the same number of non-hematology specialty provider visits than PCP visits. Conclusions: Persons with SCD in NC had low rates of co-management and used outpatient services from a wide array of specialty providers. Importantly, hematologists had lower than expected outpatient visits and patients had a significant number of acute care outpatient visits. Navigating the large number of providers and specialists requires careful evaluation of our current model of care for treating SCD. Further efforts are required to increase co-management among complex chronic diseases such as SCD. Disclosures Shah: Novartis: Research Funding, Speakers Bureau. Tanabe:NIH and AHRQ: Research Funding; Alliant Health: Consultancy; Duke University: Employment.

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2058-2058
Author(s):  
Sophie Lanzkron ◽  
Carlton Haywood ◽  
Gladys T Onojobi ◽  
John J. Strouse ◽  
Mary Catherine Beach

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.


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 ◽  
...  

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.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2113-2113
Author(s):  
Paula Tanabe ◽  
Nancy Crego ◽  
Christian Douglas ◽  
Emily Bonnabeau ◽  
Marian Earls ◽  
...  

Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark. Pain from vaso-occlusive episodes is the number one reason for ED visits and hospital admissions. This paper reports Medicaid claims data from NC for individuals with SCD, including: 1) ED encounters and re-encounters within 7, 14 and 30 days; 2) hospitalization and re-hospitalization within 7, 14 and 30 days; and 3) ED reliance (EDR) score. Methods: We examined Medicaid claims data from for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) in North Carolina. Data is reported for a cohort of 2,790 patients with a diagnosis of SCD, age 1 to 65+ and enrolled at least 11 months in NC Medicaid between March 1, 2016 and February 28, 2017. ED re-encounters and re-hospitalizations within 7, 14 and 30 days were identified using the time between the date of service listed on the ED or hospital claim and the next date of service in the subsequent claim. Individual ED Reliance (EDR) score was calculated as the total number of ED encounters divided by the total ambulatory visits (outpatient + ED encounters) per enrollee, (ambulatory visits reported elsewhere). Similar to Kroner et al, an EDR of >0.33 was considered a high score. Inpatient claims were identified using a category of service code indicating hospitalization. Results: The participants in the sample (n=2790) were majority female (57.92%), lived in metropolitan areas (77.63%) and had a mean age of 23.05 years old (SD=16.06). Of the 9,075 total ED encounters, 69.86% of the total sample had an ED encounter during the 12-month study period. There was a mean of 3.25 (SD=7.38) and median of 1 (IQR = 0 - 3) ED encounters per patient for the sample. Those who were 18-30 years old had the highest mean and median ED encounters per patient (4.98, SD= 9.34 and 2, IQR 1 to 5). The 31-45 year old group had the second most, with 4.82 (SD= 11.03) total ED encounters. The percentage of the sample with an ED re-encounter within 7, 14, and 30 days was also highest among the 18-30 year old group (29.17%, 33.98% and 40.89%) followed by those 31-45 years old (23.71%, 28.49%, and 34.80%), respectively. The 31-45 age group had the second most hospitalizations/patient and re-hospitalizations. The mean EDR was highest among 18-30 year old patients (0.35) and 46.48% of this age group had an EDR of 0.33 or greater. In the 31-45 year-old age group, the mean EDR was 0.28 and 35.18% had an EDR of 0.33 or greater. The overall sample had a mean of 1.30 (SD= 2.75) hospitalizations/patient. The 18-30 year old age group also had the highest mean total hospitalizations (2.08, SD= 3.72) and mean re-hospitalizations within 7 (0.16; SD=0.77), 14 (0.41; SD=1.68), and 30 (0.82; SD=2.79) days. The 31-45 age group had the second most hospitalizations/patient and re-hospitalizations (Table 1). Conclusions: Overall, increasing age coincided with increased ED and inpatient utilization, as well as with the period of transition from pediatric to adult SCD care. Furthermore, high EDR was most prevalent in the 18-30 age group. Our study further supports the need for increased focus on acute care utilization in the 18-45 year-old age group and considerations for improved care transition interventions. Disclosures Tanabe: NIH: Research Funding; AHRQ: Research Funding. Shah:Novartis: Consultancy, Research Funding, Speakers Bureau; Alexion: Speakers Bureau; GBT: Research Funding.


2016 ◽  
Vol 8 (1) ◽  
pp. 37-40 ◽  
Author(s):  
Joseph Lunyera ◽  
Charles Jonassaint ◽  
Jude Jonassaint ◽  
Nirmish Shah

Background: Sickle cell disease (SCD) is a complex chronic disease requiring multidisciplinary care that involves primary care physicians (PCPs) working with a hematologist or SCD specialists. However, PCPs often lack access to SCD specialists and are unaware of SCD guidelines or efficacious treatment. Methods: We partnered with Community Care of North Carolina (CCNC) to identify assigned PCPs for SCD patients with Medicaid across North Carolina. CCNC network administrators distributed a web-based questionnaire for completion. The questionnaire involved 12 self-reported items on a yes-no or a 1 to 5 Likert-type scale that assessed PCP attitudes toward SCD care, awareness of recent guidelines, and comanaging hydroxyurea. Results: Of the 53 PCPs who completed the electronic survey, 73% felt they were comfortable with the number of SCD patients in their practice. Most PCPs reported having infrequent communications with an SCD specialist (67%) and most were also not aware of the 2014 SCD guidelines (66%). Many reported that they would frequently use the new SCD guidelines if provided to them (76%). Furthermore, 51% of PCPs expressed comfort with using mobile apps to access SCD guidelines and provided email contact to receive further information. The majority also reported being comfortable comanaging hydroxyurea with an SCD specialist (65%). Conclusion: Few PCPs in North Carolina were aware of the new SCD guidelines or had regular communication with an SCD specialist. The majority of PCPs, however, demonstrated a favorable attitude toward receiving the SCD guidelines and comanaging hydroxyurea with a specialist. In response to this gap in care, we have developed a mobile-based SCD toolbox specifically for PCPs to provide guidelines, algorithms, and a method to communicate with local SCD specialists. With the interest in receiving these guidelines, we are confident the toolbox will provide an easy to use platform to assist PCPs to utilize the SCD guidelines.


2021 ◽  
Vol 12 ◽  
pp. 215013272110490
Author(s):  
Stephanie O. Ibemere ◽  
Paula Tanabe ◽  
Emily Bonnabeau ◽  
Gary Rains ◽  
Kern Eason ◽  
...  

Background Sickle cell disease (SCD) is a complex chronic blood disorder characterized by severe disease complications ideally managed by both hematologists and primary care providers (PCP’s). PCP’s report knowledge gaps and discomfort with SCD management. Our team developed and a decision support tool for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute’s SCD guidelines. We surveyed PCPs in North Carolina (NC) prior to formal dissemination to determine current co-management practices, assess toolbox acceptability, use, format preferences, and understand which algorithms would be most helpful. Method A 23-item baseline needs assessment survey was disseminated to PCPs throughout NC. Results A total of 63 medical providers responded to the survey and of these respondents, 64% reported caring for 1 to 10 patients with SCD. Only 39% of PCPs reported regular communication with an SCD specialist. Providers reported the highest level of awareness of the pediatric and adult health maintenance tools (41% and 39% respectively) and highest use of the pediatric (26%) and adult (28%) health maintenance tools. Respondents also expressed a desire to have access to multiple toolbox formats (37%) (website, mobile app and/or paper). Limitations The use of a convenience sample and low survey response are study limitations which hinder generalizability. Conclusions PCPs rarely co-managed with a specialist, had low awareness and use of SCD toolbox, and requested multiple formats for the toolbox.


Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 2489-2489
Author(s):  
Jack M Leschke ◽  
Julie A. Panepinto ◽  
Raymond G Hoffmann ◽  
Ke Yan ◽  
David Brousseau

Abstract Abstract 2489 Poster Board II-466 Elevated hospitalization rates for patients with sickle cell disease are largely a result of frequent vaso-occlusive crises. Recent hospital utilization concerns have placed increasing emphasis on rehospitalization as a cost saving and quality of care measure. For sickle cell disease, 30 day rehospitalization has become a benchmark for care quality. Previous reports have shown 30 day rehospitalization rates as high as 30-47% and propose outpatient follow-up as a preventive measure. However, these studies have been limited to single centers and have focused only on specific age groups. Our study sought to examine the efficacy of outpatient follow-up on 30 day rehospitalization prevention across all ages in a statewide Medicaid program. We hypothesized that a post-discharge outpatient visit is associated with lower rehospitalization rates for patients with sickle cell disease. The study is a retrospective cohort using Wisconsin Medicaid claims data for hospitalized children and adults with sickle cell disease from January 1, 2003 to December 31, 2007. Patients at risk for rehospitalization were identified using sickle cell disease-related ICD-9 diagnosis codes (28241, 28242, 28260-28269) at inpatient discharge. The first hospitalization with a sickle cell diagnosis for each individual was extracted and then only those hospitalizations with a diagnosis of sickle cell crisis (28242, 28262, 28264, 28269) were included. Each patient participated in the study only once. The main outcome measure was a rehospitalization within 30 days of discharge from the previous hospitalization. Individuals were considered to have had an outpatient follow-up visit based on a claim for an outpatient visit within 30 days of discharge or prior to a rehospitalization if the rehospitalization occurred in fewer than 30 days. Outpatient visits that occurred on the same day as the rehospitalization were not included. Outpatient visits were calculated as rates to avoid the bias of those not being rehospitalized having more time for an outpatient visit. Multiple logistic regression was performed to evaluate the association between having an outpatient visit, disease severity, and asthma on the outcome of rehospitalization. Severe cases were defined as individuals with 3 or more hospitalizations within 1 year beginning 2 months after the index hospitalization. Patients were excluded from our study if the index hospitalization resulted in death, as they were not at risk for rehospitalization. Four hundred and eight patients with a hospitalization for sickle cell crisis were included in the analysis. Of these 408 patients, 70 (17%) were rehospitalized within 30 days following discharge from the index hospitalization. Of the 70 re-hospitalized patients, 35 (50%) were re-hospitalized within 11 days, and 54 (77%) were rehospitalized within 22 days from discharge. Multiple regression revealed that severe disease was associated with rehospitalization (4.693, 95% CI (2.674, 8.236)), but neither the outpatient visit rate (OR 0.970, 95% CI (0.367, 2.560)) nor a diagnosis of asthma (OR 0.862, 95% CI (0.467, 1.592)) were associated with rehospitalization. Of note, when the unadjusted analysis using the simple existence of an outpatient visit prior to rehospitalization was used, outpatient visits did show an association with decreased rehospitalizations; however this association was no longer significant when adjusted for the increased time for an outpatient visit in those not rehospitalized within 30 days. Contrary to our hypothesis, outpatient follow-up was not associated with fewer rehospitalizations in our study, when the outpatient follow-up rate was used to correct for the increased time for outpatient visits in those not rehospitalized. Disease severity was found to be the only statistically significant predictor of rehospitalization for patients with sickle cell disease. Disclosures: No relevant conflicts of interest to declare.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 3391-3391
Author(s):  
Nirmish Shah ◽  
Christian Douglas ◽  
Nancy Crego ◽  
Emily Bonnabeau ◽  
Marian Earls ◽  
...  

Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark. Hydroxyurea (HU) is the standard of care for treatment for most patients with SCD and reduces the frequency of pain episodes, acute chest syndrome, need for red blood cell transfusions, hospitalizations and has been shown to improve mortality. Despite National Heart Lung and Blood Institute (NHLBI) recommendations for the use of HU beginning at 9 months of age, adherence has been historically low. We aimed to: 1) describe HU prescription fills and adherence for persons with SCD enrolled in Medicaid during a 12-month period in North Carolina (NC); and 2) determine factors that may predict good adherence. Methods: Medicaid claims were examined from data obtained from Community Care of North Carolina (CCNC) for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) between March 1, 2016 and February 28, 2017. HU claims were identified using the drug name. Only those enrolled in Medicaid for 12 months were included in this analysis. The number of HU prescriptions filled per enrollee by age group was determined by summing the number of filled HU prescriptions over the study period for each eligible enrollee. The number of HU days supplied is the sum of the days of supply on the prescription (e.g. 30-day supply) in a 12-month period per person. The duration of HU treatment days was measured as the number of days between the date of the first HU prescription filled and the last day of the study period. The number of days between breaks in treatment is the sum of days with no HU supplied, divided by the number of gaps (missing next HU prescription fill) per person. HU adherence was categorized into one of the followings: 1) Good - if number of days supplied is ≥80% of duration of HU treatment; 2) Fair or Moderate - if number of days supplied is 60-79% of duration of HU treatment; 3) Poor - if number of days supplied is < 60% of duration of HU treatment. Logistic regression was used to evaluate HU treatment adherence (good versus fair or poor). The model was conditioned on age, gender, participant residence (metro, non-metro adjacent to metro and non-metro non-adjacent to metro), co-management (at least one PCP and one hematologist visit/patient during the study period) and months enrolled in CCNC. Results: A total of 2,790 patients with Medicaid claims data were reviewed, with 649 patients meeting inclusion criteria (at least one HU prescription and 12 months enrollment in Medicaid). The participants in the sample were majority female (51.77%), lived in metropolitan areas (78.12%) and had a mean age of 16.49 years old (SD=11.49) A third of the sample (32.20%) had at least 1 HU prescription during the study period (Table 1). Those who were 1-9 years old had the highest median number of days supplied (221; range 21-750), the least median days between breaks in HU treatment (14.20; range 0-318), and the longest duration of HU treatment days (median 340; range 0-364). Those who were 18-30 years old had the lowest number of median days supplied (110; range 4-366) and the most median days between treatment (49.3; range 0-337). The 1-9 year olds also had the highest number of patients classified as good HU adherence (47.50%) and conversely the lowest classified as poor HU adherence (37.50%). In contrast, the 18-30 year old age group had the lowest good HU adherence (18.03%) and the highest poor HU adherence (69.40%) in the sample. The 31-45 year old age groups had the next lowest good HU adherence (20.93%) and next highest poor HU adherence (60.47%). Good HU adherence was most influenced by participant age. Prediction by co-management was minimal (Figure 1). Gender, residency and number of months enrolled in CCNC had little influence on HU adherence. Conclusions: Although recommended for most patients, HU was prescribed for less than one third of all patients with Medicaid in NC. Pediatric patients had the highest rate of HU prescription (40-46%) and patients over the age of 30 had the lowest (11-12%). In addition, of those prescribed HU, most patients were not classified as having good adherence. Importantly, poor HU adherence was most prevalent in the transition age group (18-30 year old), supporting the need for increased focus during the move from pediatric to adult care. Efforts should continue to explore methods that improve adherence including provider education and innovative patient strategies such as mHealth. Disclosures Shah: Alexion: Speakers Bureau; GBT: Research Funding; Novartis: Consultancy, Research Funding, Speakers Bureau. Tanabe:NIH: Research Funding; AHRQ: Research Funding.


2021 ◽  
Vol 8 (1) ◽  
pp. 18-28
Author(s):  
Paula Tanabe ◽  
Audrey L. Blewer ◽  
Emily Bonnabeau ◽  
Hayden B. Bosworth ◽  
Denise H. Clayton ◽  
...  

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.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 16-17
Author(s):  
Wally R Smith ◽  
Benjamin Jaworowski ◽  
Shirley Johnson ◽  
Thokozeni Lipato ◽  
Daniel M Sop

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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