(244) Discrimination in health care settings is associated with greater clinical and laboratory pain in sickle cell disease

Abstract More than one-third of adults with sickle cell disease (SCD) report using cannabis-based products. Many states list SCD or pain as qualifying conditions for medical marijuana, but there are few data to guide practitioners whether or whom should be certified. We postulated that certifying SCD patients may lead to a reduction in opioid use and/or health care utilization. Furthermore, we sought to identify clinical characteristics of patients who would request this intervention. Retrospective data obtained over the study period included rates of health care and opioid utilization for 6 months before certification and after certification. Patients who were certified but failed to obtain medical marijuana were compared with those who obtained it. Patients who were certified were invited to participate in a survey regarding their reasons for and thoughts on certification. Patients who were certified for medical marijuana were compared with 25 random patients who did not request certification. Fifty adults with SCD were certified for medical marijuana and 29 obtained it. Patients who obtained medical marijuana experienced a decrease in admission rates compared with those who did not and increased use of edible cannabis products. Neither group had changes in opioid use. Patients who were certified for medical marijuana had higher rates of baseline opioid use and illicit cannabis use compared with those who did not request certification. Most patients with SCD who requested medical marijuana were already using cannabis illicitly. Obtaining medical marijuana decreased inpatient hospitalizations.

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The Department of Health and Human Services (DHHS) Sickle Cell Disease (SCD) Initiative: Increasing Access and Improving Care

Blood ◽

10.1182/blood.v118.21.4834.4834 ◽

2011 ◽

Vol 118 (21) ◽

pp. 4834-4834

Author(s):

Susan B. Shurin ◽

Hani Atrash ◽

Coleen Boyle ◽

R. Lorraine Brown ◽

Janet L. Collins ◽

...

Keyword(s):

Health Care ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Health Care Providers ◽

The United States ◽

Evidence Based ◽

Care Providers ◽

Cell Disease ◽

Evidence Based Guidelines ◽

Support Research

Abstract Abstract 4834 Over the past half century, the course of sickle cell disease has been transformed in the United States through the conduct of rigorous biomedical research and broad application of the results. Universal newborn screening with comprehensive medical care has dramatically reduced death and disability in childhood, and increased the numbers of patients surviving into adulthood. However, access to health care has not kept up with the changing demographics of those affected by sickle cell disease. Health care often becomes fragmented when patients transition from pediatric to adult health care providers. Access to comprehensive care has impeded both conduct of clinical and implementation of research results. To address these needs in this changing environment, HHS Secretary Kathleen Sebelius has charged six agencies of HHS – NIH, CDC, HRSA, FDA, AHRQ and CMS – and the Offices of Minority Health and Planning and Evaluation, to improve the health of people with SCD. The agencies are coordinating their programs and collaborating with the Office of the Secretary, to achieve the following goals:create a comprehensive database of individuals with SCD to facilitate the monitoring of health outcomes and clinical research;improve the care of adults and children through development and dissemination of evidence-based guidelines, which are anticipated in Spring, 2012, with broad implementation plans;identify measures of quality of care for individuals with SCD and incorporate them into quality improvement programs at HHS;increase the availability of medical homes to improve patient access to quality primary and specialty care;provide State Medicaid officials, health care providers, patients, families and advocacy groups with information about resources related to SCD care and treatment;work with the pharmaceutical industry and academic investigators to increase the development of effective treatments for patients with SCD;support research to improve health care for people with SCD;support research to understand the clinical implications of SC trait;engage national and community-based SCD advocacy organizations and experts in ongoing discussions to ensure that issues of importance to persons affected are addressed. Organizational and strategic actions are being taken at each agency to enhance implementation of research advances; provide evidence-based guidelines to families, health care providers, and payers; facilitate new drug development; and provide public health data to impact both the health care delivery and research agendas. The enthusiastic support of the American Society of Hematology and its members is essential for long-term success of this endeavor. Disclosures: No relevant conflicts of interest to declare.

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

Blood ◽

10.1182/blood.v120.21.2058.2058 ◽

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.

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Academic Achievement for Adults with Sickle Cell Disease Compared with Healthy Siblings

Blood ◽

10.1182/blood.v124.21.4936.4936 ◽

2014 ◽

Vol 124 (21) ◽

pp. 4936-4936

Author(s):

Modupe Idowu ◽

Solomon Badejoko ◽

Paul Rowan ◽

Harinder S. Juneja

Keyword(s):

Health Care ◽

Academic Achievement ◽

Academic Performance ◽

Sickle Cell Disease ◽

Sickle Cell ◽

College Graduates ◽

College Education ◽

School Absenteeism ◽

Cell Disease ◽

Healthy Siblings

Abstract Introduction: Sickle cell disease (SCD) is a disabling condition that affects about one out of every 500 African American births in the United States. Children and adolescents with SCD have high rates of school absenteeism and poor academic achievement, yet there are very few studies that have investigated the impact of SCD on adult patients’ academic achievement. Since SCD mostly affects individuals of African descent, the possible risk factors for poor academic achievement and school absenteeism are an intricate combination of disease, demographic, and socio-economic variables. Potential associates of poor academic performance and school absenteeism in adults with SCD include health-related (pain frequency and intensity, health-care utilization), psychosocial (support system, coping mechanism), and poverty (many with SCD have low socioeconomic status). The goal of this study is to compare SCD patients’ academic achievement and school absenteeism with their unaffected siblings. Patients and Methods: Forty adult SCD patients (28 hemoglobin SS, 8 hemoglobin SC, 1 Sβ0 and 3 Sβ+; age: median = 29, range 19-56 years; sex: 20 males, 20 females) completed questionnaires relating to their academic performance. Patients on chronic transfusion therapy and those with other disabling conditions unrelated to SCD were excluded. Surveys, gathered during routine clinic visits, assessed demographics, use of hydroxyurea, current school status, highest grade completed, average number of school days missed per different time periods, average number of exams missed per school year, academic goal, and academic satisfaction. The survey also asked the patient to provide the academic achievement information for a healthy sibling, if they had a sibling within five years of age. Additional clinical measures were gathered by chart review. These included number of days in the health care facilities for acute illness and for routine clinic appointments in the previous year, and SCD-related laboratory and tests results. Results: Twenty-three out of forty patients (57.5%) were on hydroxyurea therapy and 24/40 (60%) had 3 or more hospitalizations in the previous one year. Twenty-seven (68%) of patients reported missing at least one important exam each year. Thirty-four of the forty (85%) SCD patients reported missing school on average once per week while this is true of 8/40 (13%) of their healthy siblings (p < .001, all patient/sibling comparisons tested by McNemar’s Exact (binomial) test). Six out of forty SCD patients (15%) are college graduates as compared to 14/40 (35%) of their healthy siblings (p < .001). Twenty-one of the 34 SCD patients (62%) who are not college graduates reported that they had some college education. Six out of forty SCD patients (15%) are currently in school. Five out of forty (33%) SCD patients compared with 8/40 (43%) siblings have GED or less education (not statistically different, p= .55). Nineteen (48%) of the patients reported that they were not satisfied with their academic achievement. Conclusions: School absenteeism and poor academic achievement are profound for adult patients with SCD. There is a significant difference in the school absenteeism between SCD patients and their healthy siblings. It is important to note that 62% of patients who are not college graduate reported to have had some college education; disability accommodations seem very likely to assist higher-education goals. Our future studies will focus on developing specific interventions that may improve academic support and accommodation of SCD patients. This will certainly require collaboration between patients, families, medical providers, and educational institutions. Disclosures No relevant conflicts of interest to declare.

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Research to advance health and health care for individuals with sickle cell disease: a drop in the bucket of needed research

Journal of Advanced Nursing ◽

10.1111/jan.12972 ◽

2016 ◽

Vol 72 (6) ◽

pp. 1396-1397

Author(s):

Diana J. Wilkie

Keyword(s):

Health Care ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Cell Disease

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Depression and functioning in relation to health care use in sickle cell disease

Annals of Behavioral Medicine ◽

10.1007/bf02895779 ◽

2000 ◽

Vol 22 (2) ◽

pp. 149-157 ◽

Cited By ~ 28

Author(s):

Merida M. Grant ◽

Karen M. Gil ◽

Marnita Y. Floyd ◽

Mary Abrams

Keyword(s):

Health Care ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Health Care Use ◽

Cell Disease

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Clinical and Laboratory Predictors of 30-Day Hospital Readmission Risk in Adult Patients with Sickle Cell Disease

Blood ◽

10.1182/blood-2018-99-115248 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 2384-2384

Author(s):

Seyed Mehdi Nouraie ◽

Melissa Saul ◽

Enrico M Novelli ◽

Gregory J. Kato ◽

Mark T Gladwin

Keyword(s):

Health Care ◽

Liver Disease ◽

Sickle Cell Disease ◽

Blood Transfusion ◽

Hospital Stay ◽

Sickle Cell ◽

Hospital Readmission ◽

Adult Patients ◽

Cell Disease ◽

Readmission Risk

Abstract Introduction: Thirty-day readmission risk is widely accepted as an indicator of quality of care. Sickle cell disease (SCD) has one the highest hospital readmission risk with a wide variation between different studies. In recent studies, older age, insurance status, and systemic complications including sepsis, renal and liver disease increased the risk of readmission whereas blood transfusion reduced the risk. During hospital stay, patients experience a variety of changes in their symptoms and laboratory measures. Evidence on the role of these changes on readmission risk is limited. In the current study, we aimed to assess the clinical and laboratory predictors of 30-day readmission risk in SCD adult patients in a tertiary health care system. Methods: Medical record discharge abstract files which cover visits for the SCD patients at the University of Pittsburgh Medical Center (UPMC) were extracted from electronic health records. Laboratory test results were obtained for each admission and were linked to discharge data. For each admission ICD 9/10 codes were used to identify the comorbidities. Blood transfusion information was recorded during each the admission. Natural language processing was used to extract medical concepts from chest X-ray and CT scan reports during patient's admission. Acute chest syndrome/pneumonia were identified from a combination of ICD codes and radiologic reports. For each laboratory value, a single rate of change (trajectory) was calculated with a random coefficient model from any measures during the hospital stay. Rate of changes were categorized to negative and positive trajectory. We used Generalized Estimating Equations models to assess predictors of 30-day readmission risk including the relationship between negative trajectory of any laboratory values duration the admission. Results: During January 2010 to May 2016, data for 2,108 hospital admissions in 173 SCD unique adult patients (median age of 32, 57% female and 59% SS genotype) were extracted. Risk of 30-day readmission was 41.2%. Older age (P <0.001) but not genotype (P = 0.8) predicted a lower readmission risk. Blood transfusion reduced readmission risk by 15% (Figure a). This effect was more significant in younger age (P for interaction with age = 0.045, Figure b). The most common discharge diagnoses were chronic pulmonary heart disease (23%), acute chest/pneumonia (22%), chronic renal disease (12%) and chronic liver disease (7%). Trajectory of neutrophil and WBC count changes were negative in 85% and 78% of admissions, respectively. These values were 67% for hemoglobin, 71% for creatinine and 46% for platelet count. During the period of hospital stay, decline in WBC (OR = 0.47, P = 0.030), neutrophil count (OR = 0.37, P = 0.023) or creatinine (OR = 0.40, P = 0.004) was associated with lower readmission risk. Conclusions: These results support that cardiopulmonary comorbidities are unexpectedly common in adult SCD patients. Blood transfusion in younger SCD patient reduced the readmission risk. Renal complications and leukocytosis in these patients contributed to health care utilization. Using advanced predictive models can help us to define patients who are at higher risk of readmission and generate strategies to reduce hospital readmission. Disclosures No relevant conflicts of interest to declare.

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