Medical-Legal Partnership: Impact on Patients With Sickle Cell Disease

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1 Medical-Legal Partnership: Impact on Patients With Sickle Cell Disease WHAT S KNOWN ON THIS SUBJECT: Socioeconomic factors can adversely affect health outcomes. Low-income children with chronic disease have more exposure to these factors and frequently experience poorer outcomes. Legal issues associated with low socioeconomic status contribute to these poor outcomes. WHAT THIS STUDY ADDS: An interdisciplinary approach to the care of patients with chronic disease that includes lawyers on the health care team can address legal issues previously not identified, improve access to services, and help to eliminate barriers to care. abstract OBJECTIVE: To determine the types of legal problems addressed by the Health Law Partnership (HeLP) and the impact of the legal interventions in pediatric patients with sickle cell disease (SCD) or its variants. We hypothesized that an interdisciplinary team that includes lawyers would positively affect the social determinants of health that affect patients with SCD. METHODS: The HeLP database was retrospectively queried for all patients with the diagnosis of SCD or 1 of its variants who had been seen by the lawyers of HeLP between April 2004 and September Data collected in this cohort of patients included income level of the patient/ client, the initial presenting problems, any patient/parent/guardian problems identified during the legal checkup, and the type of legal assistance provided. Estimated annualized financial outcomes were calculated. RESULTS: From April 2004 through September 2010, 71 parents/ guardians with 76 children with SCD were referred to the HeLP for legal intervention. Of the 71 parents/guardians, 33 were at 100% of the federal poverty level. There were 106 initial case problems identified in the 71 parents/guardians; 51 of 106 problems were directly related to the child. An additional 93 issues were identified during the legal checkup. Of 106 cases, 99 were closed with 21 resulting in a measurable gain of benefits. CONCLUSIONS: In a cohort of families of children with SCD, incorporating access to legal services as part of the care plan resulted in a positive impact on these patients/parents/guardians. The impact was directly attributable to the intervention of the HeLP. Pediatrics 2011; 128:e1482 e1488 AUTHORS: Robert Pettignano, MD, MBA, a,b Sylvia B. Caley, JD, MBA, RN, c and Lisa R. Bliss, JD c a Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia; b Children s Healthcare of Atlanta at Hughes Spalding, Atlanta, Georgia; and c Georgia State University College of Law, Atlanta, Georgia KEY WORDS medical-legal partnership, lawyers, sickle cell disease, outcomes, poverty ABBREVIATIONS SCD sickle cell disease HeLP Health Law Partnership Dr Pettignano, Ms Caley, and Ms Bliss made substantive intellectual contributions to development of this article. doi: /peds Accepted for publication Aug 31, 2011 Address correspondence to Robert Pettignano, MD, MBA, Department of Pediatrics, Emory University School of Medicine, 49 Jesse Hill Jr Dr SE, Atlanta, GA edu PEDIATRICS (ISSN Numbers: Print, ; Online, ). Copyright 2011 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. e1482

2 ARTICLES Factors related to low socioeconomic status can adversely affect health outcomes. Poverty increases exposure to a variety of conditions that negatively affect health. 1 Poor children are more frequently exposed to family violence and instability while experiencing less overall emotional and financial support. They have a higher likelihood of living in lower-quality, crowded housing situated in neighborhoods with higher crime rates and inferior schools. 1 Furthermore, persons of lower socioeconomic status and associated ethnic minority status experience greater psychological stress and lack of control over their lives because of inadequate social support. 2 These conditions often predispose to attendant legal issues as well. Sickle cell disease (SCD) is an inherited, chronic hemolytic anemia that was first described by James Herrick in 1910, who noted large numbers of thin sickle-shaped and crescentshaped red blood cells in the blood of a 20-year-old West Indian man. 3 This genetic disorder, characterized by the presence of the abnormal hemoglobin, hemoglobin S, is one of the most common genetic disorders worldwide. SCD is present in 1 in 400 black people in the United States, whereas 1 in 12 has the sickle cell trait. People of African descent are not the only population affected by this disease. SCD is also present in Mediterranean and Middle Eastern populations. Factors related to low socioeconomic status can adversely affect health outcomes. Poor children are more frequently exposed to family violence and instability while experiencing less overall emotional and financial support. These same poor children have a higher likelihood of living in lower-quality, crowded housing situated in neighborhoods with higher crime rates and inferior schools. 1 Furthermore, those of lower socioeconomic status and those of ethnic minorities experience greater psychological stress and lack of control over their lives that are results of inadequate social support. 2 Thus, legal problems associated with poverty can potentially affect the health and well-being of the patients and families affected by SCD who depend on the system of health care to manage their chronic disease and address acute health issues. A model that addresses the barriers to access and/or provision of care faced by lowincome children is the medical-legal partnership. 4 A medical-legal partnership is a collaboration between a legal entity such as a law school and a medical entity such as a hospital or clinic formed to address the multiple determinants of health, including legal issues that might present barriers to patient health and well-being. These partnerships are guided by the recognition that a lawyer can help patients navigate the complex legal systems that hold solutions to many social determinants of health. The medicallegal approach to patient care can create family stability, improve access to education and improve access to care and other benefits. 5 8 In 1993, the first medical-legal partnership for children was founded by Dr Barry Zuckerman to serve as a resource for patients/families at Boston Medical Center who have legal issues that impede their ability to get the care they need. Since then, 180 medicallegal partnerships have formed. In January 2009, a National Center for Medical-Legal Partnership (NCMLP) was created to serve as an informational, technical, and networking resource center for existing and emerging medical-legal partnerships. In Atlanta, Georgia, 3 community partners built on this principle of interdisciplinary health care by creating the Health Law Partnership (HeLP) in HeLP is a unique collaboration among Children s Healthcare of Atlanta, the Atlanta Legal Aid Society, and the Georgia State University College of Law. This collaboration created a true interdisciplinary approach to patient care. HeLP became a community resource for referral by health care staff to attorneys with the medical-legal partnership for assistance in offering legal solutions to patient problems. Recognizing that families of children with SCD frequently encounter legal issues related to their health and wellbeing and that those issues were being addressed by HeLP, we evaluated the use of HeLP with clients of families with SCD at our institution and the impact of HeLP s legal interventions on those problems. We hypothesized that HeLP intervention would be associated with significant improvements in care and cost savings and general benefit to the patients/parents/guardians. METHODS HeLP Model The medical-legal partnership formed by Children s Healthcare of Atlanta, Georgia State College of Law, and the Atlanta Legal Aid Society provided a new model for the metropolitan Atlanta area with certain features novel to other medical-legal partnerships. A licensed attorney is located on-site at each of the 3 Children s Healthcare campuses. A law school clinic also assists in handling cases for patients referred by the medical-legal partnership. In addition, a law school class specifically addresses system issues that require legislative or regulatory intervention and affect the patients/ parents/guardians. The annual budget for the collaboration is approximately $ Allocation of financial responsibility among the partners is 40% from the Atlanta Legal Aid Society, 40% from the Georgia State College of Law, 10% from Children s Healthcare of Atlanta, and 10% PEDIATRICS Volume 128, Number 6, December 2011 e1483

3 Check all that apply: Child Care Child Abuse Domestic Violence Disability/SSI/SSDI Appeal Application Assistance Denied Loss Overpayment Education Accommodations Discipline Evaluation Enrollment Homebound Special Ed Retention Qualified Personnel Employment FMLA Wrongful Termination Other Family Law Adoption Custody/Visitation Child Support Divorce Guardianship (< 18) Guardianship (> 18) Legitimation Paternity Financial Bankruptcy Collections Garnishment Lawsuit Pending Health Insurance Access to Insurance Medical Benefit Coverage Rx Benefit Coverage COBRA Other Housing Accommodations Arrearages Conditions Eviction Foreclosure Voucher Transfer Shelter Other Hunger Food Stamps WIC Food Pantry Other Immigration Desc Medicaid/Peachcare/EPSDT Eligibility Medical Coverage Rx Coverage Loss of Benefit Katie Beckett Mental Health TANF Utilities Electric Gas Phone Water Wills/Advance Directive/Estate Planning Other FIGURE 1 The legal checkup. SSI/SSDI indicates Social Security Disability Insurance; FMLA, Family and Medical Leave Act; COBRA, Consolidated Omnibus Budget Reconciliation Act; Rx, Prescription; WIC, Supplemental Nutrition Program for Women, Infants and Children; EPSDT, Early Periodic Screening, Diagnosis and Treatment; TANF, Temporary Assistance for Needy Families. from other sources. The largest outlay is salary and benefits for staff attorneys and law faculty. Social determinants of health are identified through a comprehensive legal checkup (Fig 1). The legal checkup is a series of questions modeled after the medical history and physical designed to identify other problems not initially recognized by the health care provider or the family. The legal checkup is performed in 2 stages and on any patient/parent/guardian referred to the HeLP. After initial contact, an intake interview is conducted to determine eligibility for services. The eligibility analysis includes determination of family income level and the legal problem identified by the patient/parents/ guardians. Patients/parents/guardians are screened to identify legal problems beyond the scope of the HeLP, such as criminal matters and personal injury claims, and are referred elsewhere for these issues. Patients/parents/guardians are queried regarding problems with issues such as child care, disability claims, domestic violence, education access, employment, or substandard housing conditions. Affirmative responses determine further evaluation for opening a case. All new initial case intakes are discussed at a weekly case-acceptance meeting conducted by HeLP. All cases are triaged for case priority, referral to a volunteer lawyer, and need for self-help assistance. Input regarding the medical problem of the patient/ parents/guardian is solicited from the medical champion. A determination for whether the case should be assigned to a HeLP lawyer or to the law school in-house clinic for direct representation is made. Cases assigned for direct representation have a second, more-detailed evaluation performed. Health care workers (physician, social worker, respiratory care professional, etc) who identify any legal issues may refer the patients/parents/guardian directly to the HeLP. Ongoing inservice educational programs are offered to familiarize health care providers with the types of legal problems with which the HeLP may provide assistance. Finally, some patients/parents/guardians self-refer after being exposed to readily available brochures or associated signage throughout the hospital. Outcomes Analysis Institutional review board approval was obtained from both Children s Healthcare of Atlanta and Georgia State University for this study. A descriptive analysis of a retrospective cohort of patients was conducted for this study. Data were obtained on all patients with SCD or a variant and/or their parents or guardians who were referred to the HeLP from April 2004 e1484

4 ARTICLES TABLE 1 Demographics Patients Age, median (interquartile range) 9.24 ( ) Gender, n/n (%) Female 36/73 (49.3) Male 35/73 (47.9 Unknown 2/73 (2.7) Education School-aged child, n/n (%) 47/73 (64.3) In school, n/n (%) 27/47 (57.4) In correct grade, n/n (%) 16/27 (59.3) No. reported missing school 10 Days missed from school 278 Average days missed from school 27.8 Median days missed from school 20 Parent/guardian Age, median (interquartile range) 35 ( ) Gender, n/n (%) Female 62/69 (89.9) Male 7/69 (10.1) Marital status, n/n (%) Unknown 7/69 (10.1) Single 26/29 (37.7) Married 19/69 (27.5) Separated 4/69 (5.8) Divorced 9/69 (13.0) Domestic partner 3/69 (4.3) Widow(er) 2/69 (2.9) Household size, median (interquartile range) 4 (3 5) No. of parents in household, n/n (%) Single-parent household 44/69 (59.4) 2-parent household 22/69 (31.9) Unknown 6/69 (8.7) through September Data were obtained from a previously developed internal database created to collect patient/parent/guardian demographics and outcomes. Patients/parents/ guardians provide informed consent for this database collection during initial HeLP intake. Data collected include self-reported family income level, legal case types, the nature of legal assistance provided, and the annualized financial outcomes. Each case is assigned a problem code (using a standard legal-problem list developed TABLE 2 Client/Parent Income Level Federal Poverty n (%) Level 200% 12 (17.4) 100% 31 (44.9) 125% 8 (11.6) 150% 7 (10.1) 200% 11 (15.9) Total 69 (100.0) by the Legal Services Corporation [LSC]) that describes the type of legal case. 9 After completion of the legal intervention, the closed case is assigned an LSC closing code that categorizes the level of service provided. 10 Benefits were calculated on the basis of an estimate of the present fair-market value of the individual benefit obtained. Annualized financial outcomes were also estimated from the database on the basis of the same methodology. The database was reviewed to determine family demographics, types of interventions, and outcomes. The average and overall financial impact attributed to obtaining public benefits, education, employment, health care, and housing was calculated; total annualized benefits are estimated to be $ Additional benefits related to issues of family law and wills/estate planning are also identified. RESULTS Sixty-nine clients with 73 children with SCD or a variant were referred to HeLP during the 77-month period described (Table 1). Median patient age of affected children was 9.24 (range: ). Of the reported case-subjects, 36 of 71 (49.3%) were female and 35 (47.9%) were male. In 2 cases there was no documentation of gender. Fiftyseven percent of school-aged patients were in school; 16 of 27 (59.3%) were in the appropriate grade. The median age of the clients was 35 (interquartile range: ). Of the 69 clients, 31 (44.9%) were at 100% of the US federal poverty level, 8 (11.6%) were between 100% and 125%, 7 (10.1%) were between 125% and 150%, 11 (15.9%) were between 150% and 200%, and 12 (17.4) were at 200% 5 (Table 2). One hundred six initial case problems were identified at the time of HeLP intake; 51 (48%) of the problems were directly related to the child (Fig 2). The most common types of problems included education (25%), Social Security Insurance (19%), housing (17%), family law (13%), and wills/power of attorney (8%). An additional 93 issues were identified either during the legal checkup or at some point throughout the legal interaction (Fig 2). These additional issues were not legal in nature and were addressed by referring the patient/parent/guardian to the appropriate resources to help them address the problem. Of 106 cases, 99 (93%) had been closed by June 30, Of the closed cases, 21 (21%) resulted in measurable gain of benefits (Table 3). The legal problems encountered included denial of benefits to people who appeared eligible. The denial then triggered the referral for the legal problem. The denial might have been caused by many factors including the inability to provide required documentation, inability to negotiate the bureaucracy, miscalculations, etc. The PEDIATRICS Volume 128, Number 6, December 2011 e1485

5 Consumer Education Employment Family law Hunger Housing Immigration Medicaid most common benefits included acquiring food stamps, obtaining Social Security Insurance or other health benefits, family stability, employment, Private Health Insurance SSI Utilities Wills/powers Child care DV Other TANF After Opened FIGURE 2 Issues before and after. SSI, Social Security Insurance; powers, powers of attorney; DV, Domestic Violence; TANF, Temporary Assistance for Needy Families. housing, and/or education (Table 3). The greatest net benefit ($ ) was ascribed to obtaining education benefits, followed by public benefits, employment, health care, and housing benefits. Three types of benefits were also described in the database: family stability, protection from violence, and wills/power of attorney. No annualized savings were ascribed to these benefits. DISCUSSION SCD is a complex, chronic disease accompanied by multiple complications including vaso-occlusive crisis, a predisposition to infection, and the need for frequent medical care. Providing quality care for patients with any illness, especially one as chronic and complicated as SCD, requires coordinated and repeated care over time. Engaging professionals from multiple disciplines and across institutional TABLE 3 Outcomes Summary (N 21) Total Average Benefits (eg, patient with denied disability benefits; with legal intervention benefits obtained) (n 5) No. of persons who obtained/retained public benefits Monthly amount of public benefits obtained/retained, $ Amount of other public benefits, $ Annualized total, $ Education (eg, patient not getting appropriate accommodations; with a letter from the lawyer accommodations provided) (n 5) Value of monthly education services obtained/retained, $ No. of persons who received education assistance No. of Persons Able to Enter/Return to School Value of evaluation services obtained/retained, $ Value of computer services obtained/retained, $ Annualized total, $ Employment (eg, mother terminated for taking off while child hospitalized; with legal intervention, mother reinstated) (n 1) Monthly employment benefits amount obtained/retained, $ No. of persons who obtained/returned to work Annualized total, $ Family law (eg, father requested legitimization and custody; with legal intervention both granted) (n 1) No. of dependents receiving financial support 1 NA No. of persons gaining family stability 4 NA Health care (eg, patient denied insurance coverage; with legal intervention coverage obtained) (n 2) No. of persons who obtained/retained health benefits Monthly amount of health benefits obtained/retained, $ Annualized total, $ Housing (eg, child living in poor housing conditions contributing to multiple hospitalizations; with legal intervention, repairs made) (n 4) Monthly amount of housing assistance obtained/retained, $ Amount of other housing benefits, $ No. of homes saved No. of persons receiving improved housing No. of persons gaining access to affordable housing Annualized total, $ Wills/estate planning (eg, grandparents needed assistance gaining power of attorney and ability to consent for care; with legal intervention both obtained) (n 2) No. of persons receiving end-of-life care Other outcome (n 1) 2 NA NA indicates not applicable. e1486

6 ARTICLES settings is a necessary part of that care, especially for low-income patients. Boulet et al 11 reported that, in a sample of patients with SCD, the parents of the patients encountered more barriers to accessing health care. In their study almost half of the families interviewed had income levels of 100% of the federal poverty level. Socioeconomic factors were determined to be a significant independent factor in physical and psychosocial health-related quality of life when assessing pain-related functional outcomes; socioeconomic factors were also cited as significant predictors of child functional disability. 12 This occurs because socioeconomic factors that affect patients with SCD can trigger the pathophysiologic mechanisms of chronic hemolytic anemia and vaso-occlusion, which result in pain and tissue injury from ischemia and therefore necessitate access to medical care and/or hospitalization. 13 Hypoxia, infection, fever, dehydration, and exposure to extremes of temperature can trigger painful events. In addition, patients have cited anxiety, depression, and physical exhaustion as precipitating causes of crises. 13 It is important for patients with SCD to minimize their exposure to potential causes of pain crises and to things that may affect their compromised immune systems. It is unfortunate that for some patients, exposure to triggers of pain crises or other health conditions can exist right inside the home. Certain housing conditions can result in exposure to environmental risk factors and increased psychological stress. 14 Such conditions could include inadequate heat or poor ventilation, mold and mildew, dust, rodent and insect infestations, or inadequate plumbing. Patients with SCD who are of low socioeconomic status are more likely to experience such risk factors. Moreover, poor housing conditions in which multiple occupants share a single dwelling might contribute to the risk of exposure to infectious diseases. In a recent study by Bundy et al, of 159 patients with influenza-related hospitalizations came from large metropolitan areas that are comparable to ours, where this type of housing condition is prevalent. Results of other studies have indicated that children with SCD who live in families with low socioeconomic status have higher hospitalization rates, more frequent emergency department visits, and more home health care needs and associated costs compared with children without SCD Coordinated holistic care for patients, provided jointly by doctors and attorneys, can address barriers to optimum health for patients with SCD by addressing an array of underlying legal problems such as housing conditions. In addition to extending the services provided by the medical-legal partnership, the law school clinic provides an interdisciplinary learning environment for members of the medical and legal professions. The clinic course component trains law students together with pediatric medical residents. These collaborative learning experiences teach future professionals to work together to address healthrelated issues for patients, including those with SCD. The collaboration offers an interdisciplinary approach to patient care, and its services can reduce patient and family stressors such as family instability, access to health insurance or other public benefits that might assist the family, substandard housing conditions, and access to education. Only 57% of the children eligible for school were actually in school. Many of these children were referred to us because their need for accommodation at school was not being addressed and the parent or guardian might have made the decision not to send the child to school. To the extent that access to education and academic achievement is the path out of poverty, we must ensure that services, such as hospital homebound services and extended school-year services, help bridge the gaps created by a student s inability to attend school regularly. A multidisciplinary approach that embraces lawyers as a part of the health care team can help identify and begin to address many of the social determinants of health that negatively affect the patient population. The ongoing relationship with lawyers as a part of patient care has resulted in the identification of additional patient issues that might not have been apparent initially and yet can affect a patient s health. Our results are limited by the lack of satisfaction data from patients with SCD and their providers. As part of the future development of the partnership, feedback will be solicited from patients/parents/guardians and providers through an approved evaluationand-research protocol. All patients/ parents/guardians are now invited to participate in a preintervention telephone survey conducted 7 to 10 business days after initial case intake and a postintervention telephone survey conducted 1 month after each identified legal case is closed. The retrospective nature of the data, the lack of statistical analysis, and small numbers might limit the interpretation of the results of this study and the global application of its concepts. However, our program has been collecting data on all encounters since its inception, and in the future we will to analyze these data to determine the impact of the partnership on patients with other chronic diseases such as asthma, developmental delay, heart disease, cancer, and diabetes. It is likely that not all patients/parents/ PEDIATRICS Volume 128, Number 6, December 2011 e1487

7 guardians who had the need for legal assistance were identified. To address this deficiency, we are educating all the medical providers to identify problems during their patient encounters. We have developed a set of questions that will be embedded into the patientinterview process for all residents and attending physicians that are aimed at identifying a potential legal problem and triggering a referral to the HeLP. Another possible concern arises because the data were collected from interviews with family members, and answers to specific questions might be unknown, undocumented, or subjected to the bias of the person reporting or collecting the data. Finally, for certain types of assistance, the calculation of benefits was based on estimates of the present value of a service REFERENCES rather than actual cost, which can lead to either an overestimation or underestimation of benefits. These initial findings, however, suggest that the medical-legal partnership model, a new service not previously available at Children s Healthcare of Atlanta, has value-added benefit to the patients and the health care organization. CONCLUSIONS Combining the health care expertise of hospital professionals with the legal expertise of lawyers allows the health care team to effectively address the socioenvironmental factors that exacerbate poor health and results in a coordinated, interdisciplinary approach that improves access to care, patient health and well-being, and access to financial resources for many patients. 1. Evans GW. The environment of childhood poverty. Am Psychol. 2004;59(2): Adler NE, Conner-Snibble A. The role of psychosocial processes in explaining the gradient between socioeconomic states and health. Curr Dir Psychol Sci. 2003;12(4): Herrick J. Peculiar elongated and sickleshaped red blood corpuscles in a case of severe anemia. Arch Intern Med. 1910;6: Zuckerman B, Sandel M, Smith L, Lawton E. Why pediatricians need lawyers to keep children healthy. Pediatrics. 2004;114(1): McMillion R. Wellness program: medicallegal partnerships pinpoint the legal causes of patient ills. ABA J. 2010:64 6. Cohen E, Fullerton DF, Retkin R, et al. Medical-legal partnership: collaborating with lawyers to identify and address health disparities. J Gen Intern Med. 2010;25(suppl 2):S136 S Rodabaugh KJ, Hammond M, Myszka D, Sandel M. A medical-legal partnership as a component of a palliative care model. J Palliat Med. 2010;13(1): Williams DR, Costa MV, Odunlami AO, Mohammed SA. Moving upstream: how interventions that address the social determinants of health can improve health and reduce disparities. J Public Health Manage Pract. 2008;14(6 suppl):s8 S17 9. Legal Services Corporation. Case service report handbook. Available at: gov/program/csr.php. Accessed August 21, US Department of Health and Human Services. Annual update of the HHS poverty guidelines. Fed Regist. 2009;74(14): Available at: gov/poverty/09fedreg.pdf. Accessed January 10, Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010;38(4 suppl): S528 S Palermo TM, Riley CA, Mitchell BA. Daily functioning and quality of life in children with sickle cell disease pain: relationship with family and neighborhood socioeconomic distress. J Pain. 2008;9(9): Baum FK, Dunn DT, Maude GH, Serjeant GR. The painful crisis of homozygous sickle cell disease: a study of the risk factors. Arch Intern Med. 1987;147(7): In families of patients with SCD, medical-legal intervention through the HeLP was associated with positive financial value and demonstrable positive impact on the overall well-being of clients/families. Further study will be important to better determine the additive impact of legal support to health care efforts on family satisfaction, physician satisfaction, and avoidance of cost through improved preventive care. ACKNOWLEDGMENTS We thank, Susan McLaren, MPH, FACHE, independent evaluator, and Bridget Bier, office manager, for their contributions in collecting and analyzing the data in this report. We also thank James Fortenberry, MD, for his review of the article. 14. Sandel M, Wright RJ. When home is where the stress is: expanding the dimensions of housing that influence asthma morbidity. Arch Dis Child. 2006;91(11): Bundy DG, Strouse JJ, Casella JF, Miller MR. Burden of influenza-related hospitalizations among children with sickle cell disease [published correction appears in Pediatrics. 2011;127(5): ]. Pediatrics. 2010;125(2): Raphael JL, Dietrich CL, Whitmire D, Mahoney DH, Mueller BU, Giardino AP. Healthcare utilization and expenditures for lowincome children with sickle cell disease. Pediatr Blood Cancer. 2009;52(2): Shankar SM, Arbogast PG, Mitchel E, Cooper WO, Wang WC, Griffin MR. Medical care utilization and mortality in sickle cell disease: a population-based study. Am J Hematol. 2005;80(4): Kauf TL, Coates TD, Huazhi L, Mody-Patel N, Hartzema AG. The cost of health care for children and adults with sickle cell disease. Am J Hematol. 2009;84(6): Nietert PJ, Abboud MR, Zoller JS, Silverstein MD. Costs, charges, and reimbursements for persons with sickle cell disease. J Pediatr Hematol Oncol. 1999;21(5): e1488

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