Healthcare utilization and expenditures for low income children with sickle cell disease

Raphael, Jean L.; Dietrich, Craig L.; Whitmire, Deborah; Mahoney, Donald H.; Mueller, Brigitta U.; Giardino, Angelo P.

doi:10.1002/pbc.21781

Cited by 83 publications

(93 citation statements)

References 23 publications

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“…It has been reported that high compliance is possible in research studies, but difficult to achieve in routine health care for patients with SCD [3][4][5][8][9]. Our study demonstrates that achieving high adherence to minimum standards of SCD care is possible in health service settings actively recruiting patients and not only in research settings.…”

Section: Discussionmentioning

confidence: 71%

“…The majority of studies exploring adherence to comprehensive care and to specific elements of care (penicillin prophylaxis, vaccination, TCD) have been performed in the United States [4][5][8][9][13][14]. This study assesses adherence to care in Western Europe where the healthcare and educational systems and the origins of the patient population are different.…”

Section: Discussionmentioning

confidence: 99%

“…Studies in the United States demonstrated that a substantial proportion of children with SCD coming from low-income backgrounds may fail to meet minimum guidelines for comprehensive care, display a higher healthcare utilization for inpatient and emergency care [4]. Immigrant children with SCD coming from non-English speaking families present the worse public health indicators of disease management [20].…”

Section: Discussionmentioning

confidence: 99%

“…Newborn screening, prophylactic penicillin, effective vaccinations, and stroke prevention have largely contributed to these results [1][2]. Even though comprehensive medical care has been shown to decrease health care resource utilization and to improve quality of life [3] for patients with SCD, in the United States only 36% of children with SCD perform at least one hematology visit per year for comprehensive care [4] and the rate of missed appointments is around 45% [5]. Moreover, although medical advances have resulted in availability of improved treatments for children with SCD, less than 50% are enrolled in Transcranial Doppler (TCD) screening programs for stroke prevention both in Europe [6][7] and the United States [8][9].…”

Section: Introductionmentioning

confidence: 99%

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Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Colombatti

Montanaro

Guasti

et al. 2012

Pediatric Blood & Cancer

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INTRODUCTIONSickle Cell Disease (SCD) is the most common genetic disease worldwide. In the past decades advances in basic research and clinical investigations have produced a marked decrease in morbidity and mortality during early childhood. Newborn screening, prophylactic penicillin, effective vaccinations, and stroke prevention have largely contributed to these results [1][2]. Even though comprehensive medical care has been shown to decrease health care resource utilization and to improve quality of life [3] for patients with SCD, in the United States only 36% of children with SCD perform at least one hematology visit per year for comprehensive care [4] and the rate of missed appointments is around 45% [5]. Moreover, although medical advances have resulted in availability of improved treatments for children with SCD, less than 50% are enrolled in Transcranial Doppler (TCD) screening programs for stroke prevention both in Europe [6][7] and the United States [8][9].In many countries SCD affects people belonging to minority communities, such as African Americans in the United States or African immigrants in Europe [10]. Immigrants present cultural, social, and financial barriers in accessing the health system and these factors have an effect on the management of chronic illnesses [11][12][13].New models of comprehensive care need to be developed in order to ensure that all patients with SCD receive high quality care and benefit from the advances in clinical research, overcoming patient-related and health system-related barriers to specialized health care [14].Italy does not have a hemoglobinopathy newborn screening program and for many years pediatric hematology services have focused primarily on thalassemia. SCD has emerged as an important health condition in the last decade due to immigration, mainly from Africa and Albania, and the number of affected children is steadily increasing [15]. The majority of patients are diagnosed with SCD in the Emergency Room during acute events or because referred to a specialized center by the pediatric general practitioner, by friends or relatives. SCD is considered a rare disease and, according to the legislation of European countries, if a patient is registered as having a rare disease by a specialized reference center, patients and families can apply for disability benefits, care is free, and drugs are provided almost for free, with only a minimum contribution (prescription token). Children usually refer to their pediatric general practitioner for routine primary care, to local hospitals for emergencies and to tertiary care reference centers for specialized care.The Clinic of Pediatric Hematology-Oncology of the Azienda Ospedaliera-Università di Padova began assisting patients with SCD in 2003.From 2003 to 2005, several patient-related and health-operator related barriers to care had been noted. Patient-related barriers in seeking and accepting care regarded mainly language difficulties, socioeconomic factors (no permit of stay, precarious living conditions, low income, dif...

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Section: Discussionmentioning

confidence: 71%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Colombatti

Montanaro

Guasti

et al. 2012

Pediatric Blood & Cancer

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“…These barriers included lack of knowledge about HU among health professionals, required frequent monitoring during HU treatment, lack of patient adherence which strongly affects the efficacy of HU, negative patient attitude towards HU treatment; and concerns about developing cancers and long-term toxicity among the health care providers and patients [2,20]. Similarly, other studies have also indicated that HU use is more likely to be associated with specialty care and that system-level barriers such as financial, geographical, and cultural challenges in accessing specialty care, may also play a role in the limited use of HU in populations such as our cohort [2,20,28]. In our SCD cohort, a small proportion of patients received SCD specialty care, with only about 11% of the visits being specialty care among the HU-treated group.…”

Section: Discussionmentioning

confidence: 75%

Clinical complications in severe pediatric sickle cell disease and the impact of hydroxyurea

Tripathi¹,

Jerrell²,

Stallworth³

2010

Pediatric Blood & Cancer

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BackgroundMore evidence of the safety and effectiveness of hydroxyurea (HU) in community‐based cohorts of pediatric patients with sickle cell disease (SCD) are needed. The association of HU with organ‐specific clinical complications and adverse events is examined herein.MethodsMedicaid medical and pharmacy claims for the calendar years January 1996 through December 2006 were used to identify a cohort of children and adolescent patients (ages 17 and under) with a diagnosis of SCD (homozygous) who were treated with HU and developed disparate complications or adverse side effects. Of the 2,194 pediatric SCD patients identified, 175 (8%) were treated with HU. Incidence density matching (1 case: 2 controls) was used to select the control group on age, gender, ethnicity, time in the Medicaid data set, and baseline severity resulting in a total study cohort of 523 cases.ResultsOrgan‐specific complications were more likely in the HU‐treated group compared to non‐HU‐treated group: cardiovascular complications (odds ratio [OR] = 3.15; confidence interval [CI] = 1.97–5.03); hepatic complications (OR 5.41; CI = 3.54–8.27); renal complications (OR 5.09; CI 3.37–7.67); and pulmonary complications (OR 4.07; CI 1.88–8.79). Many of these conditions began developing before HU was prescribed. Developing three or more complications was also more likely in the HU group (27.4% vs. 7.0%, P < 0.0001).ConclusionsExtending previous findings to routine practice settings, HU is being administered to the most severely ill children with SCD, many of whom had already started to develop organ‐specific complications, but it is not associated with development of serious adverse events. Pediatr Blood Cancer. 2010;56:90–94. © 2010 Wiley‐Liss, Inc.

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Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease

Lubeck¹,

et al. 2019

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IMPORTANCE Individuals with sickle cell disease (SCD) have reduced life expectancy; however, there are limited data available on lifetime income in patients with SCD. OBJECTIVE To estimate life expectancy, quality-adjusted life expectancy, and income differences between a US cohort of patients with SCD and an age-, sex-, and race/ethnicity-matched cohort without SCD. DESIGN, SETTING, AND PARTICIPANTS Cohort simulation modeling was used to (1) build a prevalent SCD cohort and a matched non-SCD cohort, (2) identify utility weights for quality-adjusted life expectancy, (3) calculate average expected annual personal income, and (4) model life expectancy, quality-adjusted life expectancy, and lifetime incomes for SCD and matched non-SCD cohorts. Data sources included the Centers for Disease Control and Prevention, National Newborn Screening Information System, and published literature. The target population was individuals with SCD, the time horizon was lifetime, and the perspective was societal. Model data were collected from

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Healthcare utilization and expenditures for low income children with sickle cell disease

Cited by 83 publications

References 23 publications

Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Clinical complications in severe pediatric sickle cell disease and the impact of hydroxyurea

Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease

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