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SCD DamageSCD ChallengesSCD ChallengesSymptoms & ComplicationsSCD in NumbersLiving With SCDResourcesContact Us
The SCD burden goes beyond epidemiologySickle cell disease (SCD) is one of the most common rare diseases, yet patients are often overlooked1 A 2009 paper comparing the models of comprehensive care found that while SCD is more common than cystic fibrosis or hemophilia in the United States, only a minority of affected individuals in the country are seen at specialized SCD centers.7

Generally, comprehensive care models for patients with genetic disorders that affect multiple organ systems include teams with multiple medical specialties. These models often include specialized, disease-specific centers or clinics that provide multidisciplinary, family-centered care.7SCD may pose educational challenges for patients8SCD may make it hard to maintain good grades or even graduate.8
  • On average, 27% of students with SCD aged 5 to 18 years were held back at least 1 grade
  • Students who are held back are 50% more likely to drop out of school
Data come from a meta-analysis of 44 studies (ranging from years 1937 to 2020), including 3,971 children with SCD of any genotype between the ages of 5 and 18 years.8

Limitations of the study include8:
  • Inability to analyze specific areas of academic weakness beyond broad categories due to the variability of measures across studies
  • Moderation analyses were limited to age and intellectual functioning
  • Due to inconsistent reporting across studies, other factors that can influence academic performance, such as socioeconomic status, could not be analyzed
Other factors that may affect academic performance include absenteeism due to outpatient appointments, illness and hospitalizations, and cumulative events of strokes or silent infarcts.8

A limited number of studies reported academic achievement outcomes based on cerebral infarct status.8 US hospitalizations and mortality trends in patients with SCD aged 16 to 24 years (transition-aged population) were analyzed and assessed for differences in patients without SCD from 2003 to 2017. 446,504 patients with SCD were hospitalized: 102,227 (22.9%) patients aged 16 to 18 years, 152,671 (34.2%) aged 19 to 21 years, and 191,508 (42.9%) aged 22 to 24 years. Diagnoses were coded by using ICD-9-CM and ICD-10-CM. Bivariate analyses were performed for analyses between sociodemographic characteristics and SCD hospitalizations and survey logistic regression–assessed associations between patient characteristics and in-hospital mortality.9Limitations of the study include9:
  • Absence of granular data and inability to track patients over time
  • Unobtainable information regarding exact cause of in-hospital death and additional details regarding clinical course
  • National Inpatient Sample data structure was confined to inpatient admissions—not including emergency department visits, outpatient visits, or other urgent care visits
  • Data for different SCD genotypes were not reported due to less accurate ICD-9-CM coding before the fourth quarter of 2015
Transition from pediatric to adult care can be a critical time that may be challenging for patients with SCD10Based on a review analysis of previously conducted studies, this paper aimed to close the knowledge gap between providers who are involved in treating SCD patients at transitioning age. It describes the challenges faced by these patients and proposes a management approach based on these issues.10
Even though adolescents with SCD may be aware of the importance of the transition into adult care, they may be poorly prepared.10

Young adults who are transitioning may underestimate the importance of keeping up with their care, especially if complications are asymptomatic (eg, nephropathy or retinopathy). This may result in10:
  • Missed follow-up appointments with specialists
  • Reliance on emergency care rather than following a developed plan
The review analysis found that this can lead to high rates of acute care utilization for young adults with SCD when compared to the general population with SCD (3.61 per patient, per year; 95% confidence interval 3.47-3.75 vs 2.59 per patient, per year; 95% confidence interval 2.53-2.65).10

Complications and comorbidities associated with SCD can increase social, emotional, and behavioral difficulties, which may result in increased difficulty during the transition process.10References:Beacon for rare diseases. What are rare diseases? Accessed May 4, 2024. https://www.rarebeacon.org/rare-diseases/what-are-rare-diseases/Centers for Disease Control and Prevention. Data & statistics on sickle cell disease. Accessed May 4, 2024. https://www.cdc.gov/ncbddd/sicklecell/data.htmlNational Bleeding Disorders Foundation. Hemophilia fast facts. Accessed May 4, 2022. https://www.bleeding.org/bleeding-disorders-a-z/overview/fast-factsAmerican Lung Association. Learn about cystic fibrosis. Accessed May 4, 2024. https://www.lung.org/lung-health-diseases/lung-disease-lookup/cystic-fibrosis/learn-about-cystic-fibrosisShah N, Bhor M, Xie L, Paulose J, Yuce H. Sickle cell disease complications: prevalence and resource utilization. PLoS One. 2019;14(7):e0214355. Cystic Fibrosis Foundation. About cystic fibrosis. Accessed May 4, 2024. https://www.cff.org/intro-cf/about-cystic-fibrosisGrosse S, Schechter M, Kulkarni R, Lloyd-Puryear M, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123(1):407-412.Heitzer A, Hamilton L, Stafford C, et al. Academic performance of children with sickle cell disease in the United States: a meta-analysis. Front Neurol. 2021;12:786065.Fasipe T, Dongarwar D, Lopez E, et al. Hospital use and mortality in transition-aged patients with sickle cell disease. Hosp Pediatr. 2021;11(12):1303-1310.Crosby LE, Quinn CT, Kalinyak KA. A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care. Adv Ther. 2015;32(4):293-305.SCD ChallengesDo you have what you need to help your patients?

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