Porous safety net: catastrophic health expenditure and its determinants among insured households in Togo.

BACKGROUND: In Togo, about half of health care costs are paid at the point of service, which reduces access to health care and exposes households to catastrophic health expenditure (CHE). To address this situation, the Togolese government introduced a National Health Insurance Scheme (NHIS) in 2011. This insurance currently covers only employees and retirees of the State as well as their dependents, although plans for extension exist. This study is the first attempt to examine the extent to which Togo's NHIS protects its members financially against the consequences of ill-health. METHODS: Data was obtained from a cross-sectional representative households' survey involving 1180 insured households that had reported illness in the household in the 4 weeks preceding the survey or hospitalization in the 12 months preceding the survey. The incidence and intensity of CHE were measured by the catastrophic health payment method. A logistic regression was used to analyse determinants of CHE. RESULTS: The results indicate that the proportion of insured households with CHE varies widely between 3.94% and 75.60%, depending on the method and the threshold used. At the 40% threshold, health care cost represents 60.95% of insured households' total monthly non-food expenditure. This study showed that the socioeconomic status, the type of health facility used, hospitalization and household size were the highest predictors of CHE. Whatever the chosen threshold, care in referral and district hospitals significantly increases the likelihood of CHE. In addition, the proportion of households facing CHE is higher in the lowest income groups. The behaviour of health care providers, poor quality of care and long waiting time were the main factors leading to CHE. CONCLUSION: A sizable proportion of insured households face CHE, suggesting gaps in the coverage. To limit the impoverishment of insured households with low income, policies for free or heavily subsidized hospital services should be considered. The results call for an equitable health insurance scheme, which is affordable for all insured households.

"It takes more than a fellowship program": reflections on capacity strengthening for health systems research in sub-Saharan Africa.

Sub-Saharan Africa (SSA) experiences an acute dearth of well-trained and skilled researchers. This dearth constrains the region's capacity to identify and address the root causes of its poor social, health, development, and other outcomes. Building sustainable research capacity in SSA requires, among other things, locally led and run initiatives that draw on existing regional capacities as well as mutually beneficial global collaborations. This paper describes a regional research capacity strengthening initiative-the African Doctoral Dissertation Research Fellowship (ADDRF) program. This Africa-based and African-led initiative has emerged as a practical and tested platform for producing and nurturing research leaders, strengthening university-wide systems for quality research training and productivity, and building a critical mass of highly-trained African scholars and researchers. The program deploys different interventions to ensure the success of fellows. These interventions include research methods and scientific writing workshops, research and reentry support grants, post-doctoral research support and placements, as well as grants for networking and scholarly conferences attendance. Across the region, ADDRF graduates are emerging as research leaders, showing signs of becoming the next generation of world-class researchers, and supporting the transformations of their home-institutions. While the contributions of the ADDRF program to research capacity strengthening in the region are significant, the sustainability of the initiative and other research and training fellowship programs on the continent requires significant investments from local sources and, especially, governments and the private sector in Africa. The ADDRF experience demonstrates that research capacity building in Africa is possible through innovative, multifaceted interventions that support graduate students to develop different critical capacities and transferable skills and build, expand, and maintain networks that can sustain them as scholars and researchers.

Economic burden of family caregiving for elderly population in southern Ghana: the case of a peri-urban district.

BACKGROUND: Health systems in low and lower-middle income countries, particularly in sub-Sahara Africa, often lack the specialized personnel and infrastructure to provide comprehensive care for elderly/ageing populations. Close-to-client community-based approaches are a low-cost way of providing basic care and social support for elderly populations in such resource-constrained settings and family caregivers play a crucial role in that regard. However, family caregiving duties are often unremunerated and their care-related economic burden is often overlooked though this knowledge is important in designing or scaling up effective interventions. The objective of this study, therefore, was to estimate the economic burden of family caregiving for the elderly in southern Ghana. METHODS: The study was a retrospective cross-sectional cost-of-care study conducted in 2015 among family caregivers for elderly registered for a support group in a peri-urban district in southern Ghana. A simple random sample of 98 respondents representative of the support group members completed an interviewer-administered questionnaire. Costs were assessed over a 1-month period. Direct costs of caregiving (including out-of-pocket costs incurred on health care) as well as productivity losses (i.e. indirect cost) to caregivers were analysed. Intangible costs were assessed using the 12-item Zarit burden interview (ZBI) tool and the financial cost dimension of the cost of care index. RESULTS: The estimated average cost of caregiving per month was US$186.18, 66% of which was direct cost. About 78% of the family caregivers in the study reported a high level of caregiving burden (as measured with the ZBI) with females reporting a relatively higher level than males. Further, about 87% of the family caregivers reported a high level of financial stress as a result of caregiving for their elderly relative. CONCLUSION: The study shows that support/caregiving for elderly populations imposes economic burden on families, potentially influencing the economic position of families with attendant implications for equity and future family support for such vulnerable populations.

Pregnancy history and current use of contraception among women of reproductive age in Burundi, Kenya, Rwanda, Tanzania and Uganda: analysis of demographic and health survey data.

OBJECTIVE: To examine the relationship between pregnancy history and the use of contraception among women of reproductive age (15-49 years) in East Africa. METHODS: Demographic and Health Surveys data from Burundi (2010), Kenya (2008-2009), Rwanda (2010), Tanzania (2010) and Uganda (2011) were used in the analysis. Logistic regression was used to determine the effects of women's pregnancy history on their use of contraception. SETTING: Burundi, Kenya, Rwanda, Tanzania and Uganda. PARTICIPANTS: 3226, 2377, 4396, 3250 and 2596 women of reproductive age (15-49 years) from Burundi, Kenya, Rwanda, Tanzania and Uganda, respectively, were included in the analysis. RESULTS: Women who had experienced a mistimed pregnancy were more likely to use a modern contraceptive method during their most recent sexual encounter in Kenya, Rwanda, Burundi and Uganda. Other significant correlates of women's contraceptive use were: desire for more children, parity, household wealth, maternal education and access information through radio. In-country regional differences on use of modern contraceptive methods were noted across five East African countries. CONCLUSIONS: Women's birth histories were significantly associated with their decision to adopt a modern contraceptive method. This highlights the importance of considering women's birth histories, especially women with mistimed births, in the promotion of contraceptive use in East Africa. Variations as a result of place of residency, educational attainment, access to family planning information and products, and wealth ought to be addressed in efforts to increase use of modern contraceptive methods in the East African region.

Out-of-pocket expenditure and its determinants in the context of private healthcare sector expansion in sub-Saharan Africa urban cities: evidence from household survey in Ouagadougou, Burkina Faso.

BACKGROUND: Conventional wisdom suggests that out-of-pocket (OOP) expenditure reduces healthcare utilization. However, little is known about the expenditure borne in urban settings with the current development of the private health sector in sub-Saharan Africa. In an effort to update knowledge on medical expenditure, this study investigated the level and determinants of OOP among individuals reporting illness or injury in Ouagadougou, Burkina Faso and who either self-treated or received healthcare in either a private or public facility. METHODS: A cross-sectional study was conducted with a representative sample of 1017 households (5638 individuals) between August and November 2011. Descriptive statistics and multivariate techniques including generalized estimating equations were used to analyze the data. RESULTS: Among the surveyed sample, 29.6% (n = 1666) persons reported a sickness or injury. Public providers were the single most important providers of care (36.3%), whereas private and informal providers (i.e.: self-treatment, traditional healers) accounted for 29.8 and 34.0%, respectively. Almost universally (96%), households paid directly for care OOP. The average expenditure per episode of illness was 8404XOF (17.4USD) (median 3750XOF (7.8USD). The total expenditure was higher for those receiving care in private facilities compared to public ones [14,613.3XOF (30.3USD) vs. 8544.1XOF (17.7USD); p < 0.001], and the insured patients' bill almost tripled uninsured (p < 0.001). Finally, medication was the most expensive component of expenditure in both public and private facilities with a mean of 8022.1XOF (16.7USD) and 12,270.5 (25.5USD), respectively. CONCLUSION: OOP was the principal payment mechanism of households. A significant difference in OOP was found between public and private provider users. Considering the importance of private healthcare in Burkina Faso, regulatory oversight is necessary. Furthermore, an extensive protection policy to shield households from catastrophic health expenditure is required.

Observed and expected frequencies of structural hemoglobin variants in newborn screening surveys in Africa and the Middle East: deviations from Hardy-Weinberg equilibrium.

PURPOSE: Our objective was to compare observed and expected genotype proportions from newborn screening surveys of structural hemoglobin variants. METHODS: We conducted a systematic review of newborn screening surveys of hemoglobins S and C in Africa and the Middle East. We compared observed frequencies to those expected assuming Hardy-Weinberg equilibrium (HWE). Significant deviations were identified by an exact test. The fixation index FIS was calculated to assess excess homozygosity. We compared newborn estimates corrected and uncorrected for HWE deviations using demographic data. RESULTS: Sixty samples reported genotype counts for hemoglobin variants in Africa and the Middle East. Observed and expected counts matched in 27%. The observed number of sickle cell anemia (SCA) individuals was higher than expected in 42 samples, reaching significance (P < 0.05) in 24. High FIS values were common across the study regions. The estimated total number of newborns with SCA, corrected based on FIS, was 33,261 annual births instead of 24,958 for the 38 samples across sub-Saharan Africa and 1,109 annual births instead of 578 for 12 samples from the Middle East. CONCLUSION: Differences between observed and expected genotype frequencies are common in surveys of hemoglobin variants in the study regions. Further research is required to identify and quantify factors responsible for such deviations. Estimates based on HWE might substantially underestimate the annual number of SCA-affected newborns (up to one-third in sub-Saharan Africa and one-half in the Middle East).

Catastrophic health expenditure and its determinants in Kenya slum communities.

BACKGROUND: In Kenya, where 60 to 80% of the urban residents live in informal settlements (frequently referred to as slums), out-of-pocket (OOP) payments account for more than a third of national health expenditures. However, little is known on the extent to which these OOP payments are associated with personal or household financial catastrophe in the slums. This paper seeks to examine the incidence and determinants of catastrophic health expenditure among urban slum communities in Kenya. METHODS: We use a unique dataset on informal settlement residents in Kenya and various approaches that relate households OOP payments for healthcare to total expenditures adjusted for subsistence, or income. We classified households whose OOP was in excess of a predefined threshold as facing catastrophic health expenditures (CHE), and identified the determinants of CHE using multivariate logistic regression analysis. RESULTS: The results indicate that the proportion of households facing CHE varies widely between 1.52% and 28.38% depending on the method and the threshold used. A core set of variables were found to be key determinants of CHE. The number of working adults in a household and membership in a social safety net appear to reduce the risk of catastrophic expenditure. Conversely, seeking care in a public or private hospital increases the risk of CHE. CONCLUSION: This study suggests that a substantial proportion of residents of informal settlements in Kenya face CHE and would likely forgo health care they need but cannot afford. Mechanisms that pool risk and cost (insurance) are needed to protect slum residents from CHE and improve equity in health care access and payment.

[Local perceptions of community participation in health in Burkina Faso]. / Les perceptions locales de la participation communautaire à la santé au Burkina Faso.

OBJECTIVE: Burkina Faso has been implementing a strategy of community participation in the health system for several years.The main objective of this strategy is to involve people in the decision-making process in order to improve the use of health services and to encourage massive support of communities for health promotion activities. Empirical data indicate a low involvement of communities in activities designed to promote participation. This article aims to identify the perceptions of local people in relation to community participation in health. METHODS: The study was conducted in the Tenkodo go health district, located in the administrative region of East-Center, about 190 km from the capital. This exclusively qualitative study used two data collection methods: individual interviews and focus groups. Data were collected in two health areas. RESULTS: The results show that communities have negative perceptions on the community participation in health strategy,which is perceived by the majority as a mechanism of exploitation of the population by health workers and members of health center management committees. CONCLUSIONS: These negatives perceptions of the participation strategy have a negative impact on the behaviour of communities,reflected by the very low participation rate in community activities.Urgent action is needed to revitalize the existing participation mechanisms.

Coping strategies among urban poor: evidence from Nairobi, Kenya.

AIMS: In Kenya, it is estimated that 60 to 80% of urban residents live in slum or slum-like conditions. This study investigates expenditures patterns of slum dwellers in Nairobi, their coping strategies and the determinants of those coping strategies. METHOD: We use a dataset from the Indicator Development for Surveillance of Urban Emergencies (IDSUE) research study conducted in four Nairobi slums from April 2012 to September 2012. The dataset includes information related to household livelihoods, earned incomes of household members, expenditures, shocks, and coping strategies. RESULTS: Food spending is the single most important component, accounting for 52% of total households' income and 42% of total expenditures. Households report a variety of coping strategies over the last four weeks preceding the interview. The most frequently used strategy is related to reduction in food consumption, followed by the use of credit, with 69% and 52% of households reporting using these strategies respectively. A substantial proportion of households also report removing children from school to manage spending shortfalls. Formal employment, owning a business, rent-free housing, belonging to the two top tiers of income brackets, and being a member of social safety net reduced the likelihood of using any coping strategy. Exposure to shocks and larger number of children under 15 years increased the probability of using a coping strategy. POLICY IMPLICATIONS: Policies that contain food price inflation, improve decent-paying job opportunities for the urban poor are likely to reduce the use of negative coping strategies by providing urban slum dwellers with steady and reliable sources of income. In addition, enhancing access to free primary schooling in the slums would help limit the need to use detrimental strategies like "removing" children from school.

Reproductive health voucher program and facility based delivery in informal settlements in Nairobi: a longitudinal analysis.

INTRODUCTION: In Kenya, the maternal mortality rate had ranged from 328 to 501 deaths per 100,000 live births over the last three decades. To reduce these rates, the government launched in 2006 a means-tested reproductive health output-based approach (OBA) voucher program that covers costs of antenatal care, a facility-based delivery (FBD) and a postnatal visit in prequalified healthcare facilities. This paper investigated whether women who bought the voucher for their index child and had a FBD were more likely to deliver a subsequent child in a facility compared to those who did not buy vouchers. METHODS AND FINDINGS: We used population-based cohort data from two Nairobi slums where the voucher program was piloted. We selected mothers of at least two children born between 2006 and 2012 and divided the mothers into two groups: Index-OBA mothers bought the voucher for the index child (N=352), and non-OBA mothers did not buy the voucher during the study period (N=514). The most complete model indicated that the adjusted odds-ratio of FBD of subsequent child when the index child was born in a facility was 3.89 (p<0.05) and 4.73 (p<0.01) in Group 2. DISCUSSION AND CONCLUSION: The study indicated that the voucher program improved poor women access to FBD. Furthermore, the FBD of an index child appeared to have a persistent effect, as a subsequent child of the same mother was more likely to be born in a facility as well. While women who purchased the voucher have higher odds of delivering their subsequent child in a facility, those odds were smaller than those of the women who did not buy the voucher. However, women who did not buy the voucher were less likely to deliver in a good healthcare facility, negating their possible benefit of facility-based deliveries. Pathways to improve access to FBD to all near poor women are needed.

Routine paediatric sickle cell disease (SCD) outpatient care in a rural Kenyan hospital: utilization and costs.

BACKGROUND: More than 70% of children with sickle cell disease (SCD) are born in sub-Saharan Africa where the prevalence at birth of this disease reaches 2% or higher in some selected areas. There is a dearth of knowledge on comprehensive care received by children with SCD in sub-Saharan Africa and its associated cost. Such knowledge is important for setting prevention and treatment priorities at national and international levels. This study focuses on routine care for children with SCD in an outpatient clinic of the Kilifi District Hospital, located in a rural area on the coast of Kenya. OBJECTIVE: To estimate the per-patient costs for routine SCD outpatient care at a rural Kenyan hospital. METHODS: We collected routine administrative and primary cost data from the SCD outpatient clinic and supporting departments at Kilifi District Hospital, Kenya. Costs were estimated by evaluating inputs - equipment, medication, supplies, building use, utility, and personnel - to reflect the cost of offering this service within an existing healthcare facility. Annual economic costs were similarly calculated based on input costs, prorated lifetime of equipment and appropriate discount rate. Sensitivity analyses evaluated these costs under different pay scales and different discount rate. RESULTS: We estimated that the annual economic cost per patient attending the SCD clinic was USD 138 in 2010 with a range of USD 94 to USD 229. CONCLUSION: This study supplies the first published estimate of the cost of routine outpatient care for children born with SCD in sub-Saharan Africa. Our study provides policy makers with an indication of the potential future costs of maintaining specialist outpatient clinics for children living with SCD in similar contexts.

Medical expenditures attributable to cerebral palsy and intellectual disability among Medicaid-enrolled children.

This study estimated medical expenditures attributable to cerebral palsy (CP) among children enrolled in Medicaid, stratified by the presence of co-occurring intellectual disability (ID), relative to children without CP or ID. The MarketScan(®) Medicaid Multi-State database was used to identify children with CP for 2003-2005 by using the International Classification of Diseases, Ninth Revision; Clinical Modification (ICD-9-CM) code 343.xx. Children with ID were identified for 2005 by using ICD-9-CM code 317.xx-319.xx. Children without CP or ID during the same period served as control subjects. Medical expenditures were estimated for case and control children for 2005. The difference between the average expenditures for children with and without CP was used as a proxy for attributable expenditures for the condition. The attributable expenditures of co-occurring ID were calculated similarly as the difference in average expenditures among children with CP with and without ID. A total of 9927 children with CP were identified. Among them, 2022 (20.3%) children had co-occurring ID recorded in medical claims. Children with CP but without ID incurred medical expenditures that were $15,047 higher than those of control children without CP or ID. By contrast, children with CP and co-occurring ID incurred costs that were $41,664 higher, compared with control children, and $26,617 more than children with CP but without ID. Administrative data from a large, multistate database demonstrated high medical expenditures for publicly insured children with CP. Expenditures approximately tripled for children with CP and co-occurring ID.

Health care expenditures associated with venous thromboembolism among children.

INTRODUCTION: We used health insurance claims data from large samples of Medicaid-enrolled and privately insured children to identify children with venous thromboembolism (VTE) and to assess their use of health services and associated expenditures during 2009. MATERIALS AND METHODS: Data from the 2009 Thomson Reuters MarketScan® Commercial Database and Multi-State Medicaid database were used to estimate annual expenditures for children 1-17 years of age with VTE. Generalized linear models were used to calculate adjusted annual expenditures for Medicaid-enrolled and privately insured children with VTE, controlling for age, sex, type of health plan, VTE classification (deep vein thrombosis and/or pulmonary embolism), and type of VTE event (idiopathic or secondary) and race (Medicaid only) or region (Commercial only). RESULTS: During 2009, Medicaid-enrolled and privately insured children with VTE had an average of 1-2 inpatient admissions and 8-10 non-emergency department visits. Unadjusted mean total expenditures were similar for Medicaid-enrolled and privately insured children with VTE, $105,359 and $87,767, respectively. Adjusted mean expenditures for children with secondary VTE were five times higher than for children with idiopathic VTE. CONCLUSIONS: Given the high frequency of secondary VTE in children, most of the associated expenditures may be due to other health conditions. However, children who develop a VTE incur substantial costs of care, even in the absence of related conditions. Additional research is needed to evaluate the long term outcomes for children with VTE including rates of readmission, complications, and the impact of co-morbid conditions.

Autism spectrum disorders and health care expenditures: the effects of co-occurring conditions.

OBJECTIVE: Children with autism spectrum disorders (ASDs) often have co-occurring conditions, but little is known on the effect of those conditions on their medical care cost. Medical expenditures attributable to ASDs among Medicaid-enrolled children were calculated, and the effects of 3 commonly co-occurring conditions--intellectual disability (ID), attention deficit/hyperactivity disorder (ADHD), and epilepsy-on those expenditures were analyzed. METHODS: Using MarketScan Medicaid Multi-State Databases (2003-2005) and the International Classification of Disease, Ninth Revision, children with ASD were identified. Children without ASD formed the comparison group. The 3 co-occurring conditions were identified among both the ASD and the comparison groups. Annual mean, median, and 95th percentile of total expenditures were calculated for children with ASD and the co-occurring conditions and compared with those of children without ASD. Multivariate analyses established the influence of each of those co-occurring conditions on the average expenditures for children with and without ASD. RESULTS: In 2005, 47% of children with ASD had at least 1 selected co-occurring condition; attention deficit/hyperactivity disorder was the most common, at 30%. The mean medical expenditures for children with ASD were 6 times higher than those of the comparison group. Children with ASD and ID incurred expenditures 2.7 times higher than did children with ASD and no co-occurring condition. CONCLUSION: Medicaid-enrolled children with ASD incurred higher medical costs than did Medicaid-enrolled children without ASD. Among Medicaid-enrolled children with ASD, cost varied substantially based on the presence of another neurodevelopmental disorder. In particular, children with ID had much higher costs than did other children with ASD.

Sickle cell disease in Africa: a neglected cause of early childhood mortality.

Sickle cell disease (SCD) is common throughout much of sub-Saharan Africa, affecting up to 3% of births in some parts of the continent. Nevertheless, it remains a low priority for many health ministries. The most common form of SCD is caused by homozygosity for the ß-globin S gene mutation (SS disease). It is widely believed that this condition is associated with very high child mortality, but reliable contemporary data are lacking. We have reviewed available African data on mortality associated with SS disease from published and unpublished sources, with an emphasis on two types of studies: cross-sectional population surveys and cohort studies. We have concluded that, although current data are inadequate to support definitive statements, they are consistent with an early-life mortality of 50%-90% among children born in Africa with SS disease. Inclusion of SCD interventions in child survival policies and programs in Africa could benefit from more precise estimates of numbers of deaths among children with SCD. A simple, representative, and affordable approach to estimate SCD child mortality is to test blood specimens already collected through large population surveys targeting conditions such as HIV, malaria, and malnutrition, and covering children of varying ages. Thus, although there is enough evidence to justify investments in screening, prophylaxis, and treatment for African children with SCD, better data are needed to estimate the numbers of child deaths preventable by such interventions and their cost effectiveness.

Medical expenditures of children in the United States with fetal alcohol syndrome.

This paper calculates the medical expenditures for pediatric Medicaid enrollees with fetal alcohol syndrome (FAS), those with and those without reported intellectual disability (ID). The pediatric portion of the MarketScan® Medicaid Multi-State databases for the years 2003-2005 was used. Children with FAS were identified based on International Classification of Diseases, Ninth Revision, Clinical Modification codes. Children without FAS formed the comparison group. Annual mean, median, and 95(th) percentile total expenditures were calculated for those continuously enrolled during 2005. Children with FAS incurred annual mean medical expenditures that were nine times as high as those of children without FAS during 2005 ($16,782 vs. $1,859). ID more commonly was listed as a medical diagnosis among children with FAS than among children in the comparison group (12% vs. 0.5%), and mean expenditures of children with FAS and ID were 2.8 times those of children with FAS but without reported ID. Children with FAS incurred higher medical expenditures compared with children without FAS. A subset of children with FAS who had ID sufficiently serious to be recorded in medical records increased those expenditures still further. Our estimate of mean expenditures for children with FAS was several times higher than previous estimates in the United States.

Sickle cell disease-related pediatric medical expenditures in the U.S.

BACKGROUND: Although it is known that people with sickle cell disease (SCD) have relatively high utilization of medical care, most previous estimates of SCD-attributable expenditures have been limited to either inpatient care or single-state data. PURPOSE: To extend known findings by measuring the attributable or incremental expenditures per child with SCD compared to children without this illness and to thereby estimate SCD-attributable expenditures among children in the U.S. METHODS: MarketScan Medicaid and Commercial Claims databases for 2005 were used to estimate total medical expenditures of children with and without SCD. Expenditures attributable to SCD were calculated as the difference in age-adjusted mean expenditures during 2005 for children with SCD relative to children without SCD in the two databases. RESULTS: Children with SCD incurred medical expenditures that were $9369 and $13,469 higher than those of children without SCD enrolled in Medicaid and private insurance, respectively. In other words, expenditures of children with SCD were 6 and 11 times those of children without SCD enrolled in Medicaid and private insurance, respectively. CONCLUSIONS: Using a large, multistate, multipayer patient sample, SCD-attributable medical expenditures in children were conservatively and approximately estimated at $335 million in 2005.

Administrative data sets and health services research on hemoglobinopathies: a review of the literature.

CONTEXT: Large administrative healthcare data sets are an important source of data for health services research on sickle cell disease (SCD) and thalassemia. This paper identifies and describes major U.S. healthcare administrative databases and their use in published health services research on hemoglobinopathies. EVIDENCE ACQUISITION: Publications that used U.S. administrative healthcare data sets to assess healthcare use or expenditures were identified through PubMed searches using key words for SCD and either costs, expenditures, or hospital discharges; no additional articles were identified by using thalassemia as a key word. Additional articles were identified through manual searches of related articles or reference lists. EVIDENCE SYNTHESIS: A total of 26 original health services research articles were identified. The types of administrative data used for health services research on hemoglobinopathies included federal- and state-specific hospital discharge data sets and public and private health insurance claims databases. Gaps in recent health services research on hemoglobin disorders included a paucity of research related to thalassemia, few studies of adults with hemoglobinopathies, and few studies focusing on emergency department or outpatient clinic use. CONCLUSIONS: Administrative data sets provide a unique means to study healthcare use among people with SCD or thalassemia because of the ability to examine large sample sizes at fairly low cost, resulting in greater generalizability than is the case with clinic-based data. Limitations of administrative data in general include potential misclassification, under-reporting, and lack of sociodemographic information.