Sickle Cell Disease in Social Security Disability Evaluations (2025)
Chapter: 7 Cumulative Burden of Living with Sickle Cell Disease
7
Cumulative Burden of Living with Sickle Cell Disease
As the previous chapters illustrate, sickle cell disease (SCD) is a complex disorder that may affect any organ system in the body, with its expression differing among individuals. Children with SCD now survive into adulthood, but with the increased longevity comes an increased number of complications. This can lead to an additive effect on functioning over time, particularly among individuals in their 40s, 50s, and 60s, when multiple organs may be chronically affected.1 Because of SCD’s chronic and multisystem nature and its heterogenous presentation, a focus on a single set of symptoms or effects on a single body system is unlikely to capture the full burden or severity of disease experienced by individuals living with SCD, including effects on their day-to-day functioning. It is important, therefore, to consider the whole person and the cumulative burden of SCD across all body systems, especially when none of the effects on individual body systems is sufficient to meet or medically equal any of the Social Security Administration (SSA) listing criteria.
This chapter focuses on the quality of life and the cumulative burden of living with SCD and some of the available measures used to assess that burden. The chapter also reviews challenges in accessing SCD care, including the particularly vulnerable period during the transition from pediatric to adult health care. The chapter concludes with an overview of the effects of SCD on school and work.
___________________
1 Payal Desai, “Functional Outcomes of Sickle Cell Disease: The Whole-Person Experience – public webinar” on February 21, 2025.
QUALITY OF LIFE AND CUMULATIVE BURDEN OF LIVING WITH SICKLE CELL DISEASE
Sickle Cell Disease over the Life Course
The cumulative burden of SCD on an individual’s lived experience can be clarified by distinguishing between illness and disease. Whereas disease is understood through a biomedical lens that focuses on biological structure, detection, and treatment, illness centers on patients’ individual subjective experiences and places their responses to, and navigation of, disease in a broader social context (Kleinman, 1980). This person-centered approach illuminates how the clinical manifestations of SCD affect quality of life and the complex experience of living with the disease.
Given its chronicity, the disease and illness burdens of a chronic illness such as SCD are experienced cumulatively across the lifespan (Ben-Shlomo and Kuh, 2002). In addition to acute and chronic complications, such as acute pain crises, acute chest syndrome, stroke, and end-organ damage, people living with SCD typically experience chronic pain as well as chronic fatigue, disordered sleep, and depression, all of which may negatively affect functioning and quality of life (Ameringer et al., 2014; Cheminet et al., 2024; Childerhose et al., 2023; Jagtiani et al., 2024; Sharma et al., 2015; Smith et al., 2008; Sogutlu et al., 2011; Swanson et al., 2011; Wallen et al., 2014).
“Living with sickle cell disease impacts every part of my daily life. Physically, I deal with constant fatigue, pain from sickle cell crises, and deep, chronic pain from complications like avascular necrosis.…Mentally, the burden of always trying to ‘push through’ is overwhelming.…Even when I’m not in crisis, the fatigue is bone deep. It makes it hard to concentrate, to show up consistently, and to keep up with everyday demands.…It all accumulates—physically, emotionally, and mentally.”
—Teanika Hoffman, founder and executive director, Sickle Cell Coalition of Maryland2
Individuals are “weathered,” like rocks by water and wind, by the progressive nature of the disease and by the chronic exposure to the psychological, social, and economic toll of navigating life with the illness (Aronson et al., 2024; Kavanagh et al., 2022). The weathering hypothesis argues that chronic exposure to these stressors causes an individual’s body to age faster (Forde et al., 2019). This chronic strain includes the health care barriers, psychosocial burdens experienced in and outside of the clinic, and
___________________
2 Call for Perspectives Follow Up, submitted July 18, 2025.
social and economic burdens that individuals living with SCD experience as they navigate disease and illness in a complex and fragmented health care system. Some individuals living with SCD are weathered by exclusion from early, adequate health care, which can result in systemic barriers to documenting the full burden of their illness. For this reason, it is necessary to assess the cumulative burden of SCD across all body systems while also taking into account the complex social context in which they live to understand the overall effect of the condition on an individual’s quality of life, well-being, and functional status.
The acknowledgment that medical and social drivers determine health care outcomes has led to the adoption of a life-course approach to understanding health. The World Health Organization states,
The life-course approach takes a temporal and societal perspective on the health and well-being of individuals and generations, recognizing that all stages of a person’s life are intricately intertwined with each other, with the lives of others born in the same period, and with the lives of past and future generations. Adopting a life-course approach involves acting early in the life course, appropriately during life’s transitions, and together as a whole society. (WHO, 2021, p. ii)
In SCD, this approach is appropriate for understanding the cumulative burden of the disease because it is inherited and progressive, with clinical, social, and structural burdens experienced in early life affecting health outcomes and quality of life throughout subsequent years.
Measuring the Burden of Living with Sickle Cell Disease
The complexity of the SCD illness experience is seen in the indirect economic burdens, which include medical and nonmedical costs (Baldwin et al., 2022; Holdford et al., 2021; Lee et al., 2020).
Quality-Adjusted Life Years and Disability-Adjusted Life Years
Quality-adjusted life years (QALYs) and disability-adjusted life years (DALYs) are used widely as health economic metrics that capture the burden of disease and inform value-based decisions on treatment strategies for SCD. These measures are relevant, given the lifelong physical and psychosocial challenges individuals with SCD face, including chronic and neuropathic pain, organ damage, and reduced life expectancy. One study reviewed the application of cost-effectiveness analyses in SCD and found that while QALYs are commonly used to evaluate treatments such as hydroxyurea and chronic transfusion therapy, major limitations exist because of the sparse utility data specific to the SCD population and the
variability in model assumptions (Jiao et al., 2021). Another study used DALYs in a global modeling analysis to assess the value-based price of transformative gene therapy and found significant variation in pricing thresholds by country, underscoring equity concerns in access to innovation (Morgan et al., 2024).
To further address these concerns, investigators applied a distributional cost-effectiveness analysis framework that incorporates equity weights to capture the effects of treatments on disparities and demonstrated that while gene therapy for SCD is not cost-effective by traditional standards, it produces substantially higher QALY gains over standard of care treatment (25.5 vs. 15.7 for females, 24.4 vs. 15.5 for males) and could be considered cost-effective by distributional cost-effectiveness standards (Goshua et al., 2023). By integrating societal values, distributional cost-effectiveness analysis supports decision making that is sensitive to health inequities.
Together, these studies emphasize the importance of including nuanced, equity-informed metrics along with QALYs and DALYs to evaluate interventions for SCD and promote more just health care delivery. Such an approach would be consistent with the work of Sick Cells, a community-based advocacy group that emphasized that QALYs do not adequately reflect broader effects for people with SCD, including school performance, economic productivity, and caregiving capacity, and urged the use of an equity-sensitive framework to capture these critical factors (Sick Cells, 2020).
Patient-Reported Outcomes and Measurement Tools in Sickle Cell Disease
Patient-reported outcomes (PROs) are self-reports of individuals’ health status and experience without a provider’s interpretation (Singh et al., 2020). In SCD, PROs are important for understanding the effect of the condition on quality of life, well-being, and functional status. Patient-reported outcome measures (PROMs) are standardized instruments, questionnaires, or measures used to collect and analyze data about PROs. In addition to PROMs, functional status questionnaires are used in the area of SCD to assess individuals’ ability to perform daily activities and the effects of pain and other symptoms on their functioning. Table 7-1 includes a summary of common SCD PROMs and functional status questionnaires.
One recent study found that children with SCD experienced diminished health-related quality of life compared with a normative sample of children (Campbell et al., 2023). Children with SCD aged 2 months to 4 years had lower scores across all health-related quality-of-life domains, while children of ages 5 to 11 years experienced deficits in all domains except behavior (Campbell et al., 2023). The frequency of vaso-occlusive pain crises was
TABLE 7-1 Selected Patient-Reported Outcome Measures and Functional Status Questionnaires in SCD
| Measurement Tools | Description |
|---|---|
| Patient-Reported Outcome Measures | |
| Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me) (HealthMeasures, 2025; Keller et al., 2014) | Assesses health-related quality of life in adults with sickle cell disease (SCD) across seven domains: emotional impact, social functioning impact, pain impact, pain episode frequency and severity, stiffness impact, sleep impact, and SCD medical history checklist |
| Short Form-36 Health Survey (SF-36) (McClish et al., 2005) | Assesses overall health-related quality of life across eight domains: physical functioning, role limitations due to physical health, bodily pain, general health perceptions, vitality (energy/fatigue), social functioning, role limitations due to personal or emotional problems, and mental health |
| Pediatric Quality-of-Life Inventory (PedsQL) (McClellan et al., 2008; Varni et al., 2001) PedsQL Sickle Cell Disease Module (Panepinto et al., 2013) | Assesses health-related quality of life in children and adolescents aged 2 to 18 years and includes physical functioning, emotional functioning, social functioning, and school functioning The PedsQL Sickle Cell Disease Module focuses on symptoms and challenges unique to a given condition with nine domains: pain and hurt, pain impact, pain management and control, worry I, worry II, emotions, treatment, communication I, and communication II. |
| Patient-Reported Outcomes Measurement Information System (PROMIS) (Cella et al., 2007) | Assesses physical, mental, and social health across chronic conditions and the general population and includes physical, mental, social, and global health; PROMIS measures have been used widely in both adult and pediatric SCD research to assess pain, fatigue, emotional functioning, and quality of life (Dampier et al., 2016a,b; Esham et al., 2020). |
| Sickle Cell Stress Scale (Smith et al., 2022) | Consists of two valid and reliable specific measures of SCD-specific stress for research and clinical care for adults: one is a 3-item and the other a 10-item measure. |
| Functional Status Questionnaires | |
| Functional Status-Based Pain Assessment (Guy et al., 2019; Smith et al., 2025) | Assesses functional limitations resulting from pain and readiness for discharge in hospitalized individuals with SCD |
| Sickle Cell Disease Functional Assessment (SCD-FA) (Oyedeji et al., 2022) | Assesses seven domains: functional status, comorbid medical conditions, psychological state, social support/social functioning, weight status, cognition, and patient-reported medication list |
associated with worse health-related quality of life in most domains. Children who had experienced three or more vaso-occlusive crises in the past 12 months had worse health-related quality-of-life scores than those who had experienced fewer than three vaso-occlusive crises, except in the domains of combined behavior/getting along and change in health for children ages 2 months to 4 years and behavior and global behavior in children ages 5 to 11 years (Campbell et al., 2023).
More studies are needed to support PROM responsiveness to chronic SCD over time in both adults and children (Curtis and Brandow, 2017). This is important because demonstrating the responsiveness of PROMs over time is essential for ensuring they can accurately detect meaningful changes in health status, particularly in a chronic and progressive condition with acute exacerbations like SCD. In both adults and children with SCD, symptoms such as pain, fatigue, and emotional distress can vary significantly over time. Validating PROM responsiveness over time will help to track disease progression and treatment effects more reliably, support clinical decision making using patient-centered data, justify intervention strategies in research and care by showing measurable improvement or decline, and ensure that tools are sensitive to the lived experience of SCD, not just snapshot views.
Functional status questionnaires may help health care providers evaluate readiness for discharge during a sickle cell vaso-occlusive crisis and can also be used to track the progression of the disease and the effectiveness of treatments over time. The Functional Status-Based Pain Assessment (FSPA) (Smith et al., 2025) was developed to measure functional limitations resulting from pain in individuals with SCD and to help assess hospitalized patients’ readiness for discharge. The FSPA collects self-reported responses to 10 questions about the level of difficulty (on a five-point scale) the person experiences in performing activities such as sleeping, watching television, walking around the room, or eating a meal in a chair as well as asking the person to rate his or her pain using a 0–10 numeric rating scale. Similarly, the Sickle Cell Disease Functional Assessment (SCD-FA) (Oyedeji et al., 2022) was developed from a combination of validated patient-reported measures and focuses on seven domains, including functional status. Pilot research found the SCD-FA to be a feasible way to identify functional impairments in adults with SCD.
CHALLENGES IN ACCESS TO CARE FOR SICKLE CELL DISEASE
Challenges to accessing appropriate SCD care may increase the burden of the disease process. While access to coordinated comprehensive SCD care across the life course can lead to better outcomes, unaddressed needs,
including during care transitions, can exacerbate and accelerate complications, leading to disability.
Health Care Paradigm
Care coordination, “the organization of a patient’s care across multiple health care providers,” improves health care outcomes for individuals (CMS, 2023). Given the multisystem burden of SCD, individuals often require specialized care from a variety of health care providers across a broad range of disciplines (Grismore et al., 2025; HHS, 2020a). However, the health care paradigm for SCD, which parallels the larger United States model of care, has historically been fragmented, including limitations in care integration among providers (primary care and specialists) and care settings (outpatient and inpatient) (Grismore et al., 2025).
Newborn screening for SCD has been a major public health success in the United States, enabling early diagnosis and treatment to prevent severe childhood complications (Therrell et al., 2015). Although newborn screening for SCD was first implemented in 1975, universal screening was only realized in 2006 (Minkovitz et al., 2016). While the screening is now universal, recent data show persistent gaps in how positive screens are communicated and acted upon. One study, for example, found considerable variability in how states notify families about sickle cell trait (SCT) status, with no standard approach to renotification at reproductive age—even though knowledge of SCT is critical for reproductive decision making (Scott et al., 2024).
Another study highlighted that follow-up systems are fragmented: many states lack standardized processes to ensure that infants with positive screens see an SCD specialist in a timely manner (Galadanci et al., 2023). Common barriers include inaccurate provider information, difficulties locating families, and the absence of robust quality assurance to track whether families connect with specialty care. Together, these studies underscore that while universal screening is well established, addressing notification inconsistencies, improving data systems, and standardizing follow-up procedures are essential next steps to maximize the benefits of SCD newborn screening in the United States.
Research in young adults living with SCD has shown that fragmentation starts at a young age (Shatola et al., 2019). This fragmentation has implications for health outcomes. As Chapter 4 reviews, health care delivery for SCD occurs within various settings, and limited harmonization among those settings affects the care individuals receive (Kanter et al., 2025).
As Chapter 1 describes, children with SCD ideally would receive care from a primary pediatric care provider for general pediatric care and a multidisciplinary SCD medical team for SCD-specific symptomatology and
complications. While in pediatric care, such a comprehensive care model would emphasize early preventive care, including penicillin prophylaxis, vaccinations, and transcranial Doppler screening. Research has shown that a comprehensive approach to SCD care decreases emergency department encounters and hospitalizations and is a strategy for improving pediatric care (Raphael et al., 2013). Despite the improved life expectancy of adults with SCD since the 1970s, the disease can still negatively affect individuals and limit their quality of life and access to health care. Access to care for adults with SCD remains lower than for other diseases, although, as Chapter 1 discusses, addressing this disparity has become a priority over the years, and different models of care have been used to introduce new ways of treating adults living with SCD (Brandow et al., 2020; Kanter et al., 2020; McNulty, 2022). Despite this work, children with SCD generally receive a higher quality of care because of increased access to comprehensive sickle cell care compared to adults living with SCD, negatively affecting health outcomes for the latter group (Grismore et al., 2025; Treadwell et al., 2011).
While there has been progress toward building coordinated networks of care by establishing standardized centers of excellence, these efforts are emerging, and current care for many patients is not only fragmented but also limited regarding the necessary specialty care (Kanter et al., 2025). The hope is that the increased availability of these centers will model the benefits of coordinated care seen in other conditions. These efforts could affect health outcomes for individuals living with SCD positively by improving the diagnosis and interpretation of complications, increasing access to routine services, and ensuring enhanced access to specialty care in urban and rural areas, all of which are essential to providing accurate documentation of sickle cell-related complications in the medical record across the life course (Kanter et al., 2020).
In addition, palliative care across the lifespan provides holistic, person-centered support to individuals with serious illnesses—regardless of age or disease stage—by addressing physical, emotional, social, and spiritual needs to enhance the quality of life and align care with personal goals. Considering the significant cumulative burden of SCD, palliative care is essential in addressing acute and chronic pain, progressive organ damage, emotional distress, and disability that often worsens over time. By focusing on symptom management, psychosocial support, and functional preservation, palliative care helps reduce suffering, address disability-related challenges, and improve the quality of life for individuals with SCD across the lifespan. Unfortunately, palliative care is underused in SCD. However, the use of palliative care in SCD could potentially improve health care resource usage (Jayakumar et al., 2024; Wickersham et al., 2022; Wilkie et al., 2010).
Challenges During the Transition from Childhood to Adulthood
The transition from childhood to adulthood is a normal part of childhood development. Several fundamental characteristics of children and youth differ from those of adults. One framework includes “the 5 Ds”: developmental change, disease/differential epidemiology, dependence, demographics, and dollars (Cheng and Mistry, 2019, 2023; Forrest et al., 1997; NASEM, 2024; Stille et al., 2010). Of the five, developmental change, dependence, and dollars (health care financing) are the most relevant to the transition from pediatric to adult health care for individuals with SCD. Children are dependent on parents or other caregivers, and their care occurs in the context of the family unit. Not only is the health and well-being of the family likely to significantly affect the health of children with SCD, but management of the disease is a collaborative effort between the children and their caregivers. As children with SCD develop, they must learn to assume increasing responsibility for self-managing their disease and associated health care to the extent they are able to do so.
Financing for pediatric health care also differs from that for adults. As children transition from adolescence into young adulthood, they generally are expected to become more financially self-sufficient and depend less on family resources for support. At the same time, they may “age out” of parental health insurance or public programs, such as Medicaid and the Children’s Health Insurance Program, leaving them vulnerable to loss of, or gaps in, necessary health care services.
The transition to adulthood is a longitudinal and multifaceted process across multiple domains, including health care, school, employment, finances, and others. It also involves multiple key changes in physical, emotional, and social development for an adolescent and young adult, such as gaining self-management skills and navigating new roles in society (Wood et al., 2018). The pediatric-to-adult health care transition is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems” (Blum et al., 1993, p. 570). Youth with SCD now survive into adulthood and require a transition to adult-centered care.
For individuals with SCD, navigating the transition to adulthood is especially complex, given that they often are navigating the transfer of multiple services and supports for their condition along with the typical changes faced by anyone transitioning from childhood to adulthood (HHS, 2020b). This transition also has high stakes for long-term health outcomes (NASEM, 2020). Despite increased survival, individuals aged 18–30 years have worse outcomes than their younger and older counterparts (Brousseau et al., 2010). The increase in acute care visits and higher rates of mortality compared with other age groups underscore this vulnerable transition
period. An analysis of U.S. hospitalizations and mortality trends in individuals aged 16 to 24 years from 2003 to 2017 found individuals with SCD ages 19 to 21 and 22 to 24 experienced higher in-hospital mortality compared with those ages 16 to 18, a difference not found in individuals without SCD (Fasipe et al., 2021). Similarly, a study of national mortality data from 2010 to 2020 found a persistent spike in the mortality rate among young adults with SCD ages 20 to 24 years versus youth with SCD ages 15 to 19 years, corresponding with the transition from pediatric to adult care (Karkoska and McGann, 2024).
Increased SCD-related complications, health care use, and health care costs have been reported during the transition period from pediatric to adult care (Blinder et al., 2013; Kanter et al., 2020), along with evidence of decreased use of disease-modifying therapies such as blood transfusions, iron-chelating therapies, and hydroxyurea (Blinder et al., 2013). Some challenges contributing to these suboptimal outcomes include multilevel factors such as individual self-management skills and support, lack of access to adult health care providers, and health insurance changes or gaps in coverage (HHS, 2020b).
“When I turned 26 last October, I was under the impression that I would be kicked off my parent’s insurance at the end of 2019, but I got kicked off their insurance at the end of October and I was scrambling to try to fix that because my insurance didn’t kick in until January 1, 2020.…I had a doctor’s appointment that needed to be covered.”
—SCD patient3
Such challenges may be compounded by the sense of loss and abandonment felt in losing a relationship with health care providers whom the person with SCD may have known his or her entire life. Collectively, the literature provides a multidimensional overview of the transition process, from assessment and intervention to contextual barriers and outcomes (Howell et al., 2021; Osunkwo et al., 2023; Sheppard et al., 2023; Treadwell et al., 2011, 2016).
Adolescents and young adults who are better supported during the transition process may have better outcomes, which may have longitudinal implications for the risk of functional impairments over time. One group of investigators developed and validated an SCD-specific transition readiness assessment tool focused on self-management, communication skills, and self-efficacy, an attribute they later linked directly to transition success
___________________
(Treadwell et al., 2016). Such assessments provide critical information for tailoring pretransition support to the needs of the individual. Well-orchestrated transition programs, where patients are supported by familiar health care providers and introduced early to adult care teams, significantly reduce the risk of disengagement from care and overuse of emergency care (Howell et al., 2021). The identification of real-world barriers and systemic gaps, such as fragmented communication and insurance instability, is important prior to program implementation to ensure context-sensitive program design that addresses both institutional and individual-level challenges (Sheppard et al., 2023). These and other studies confirm that transition readiness, structured interventions, system-level coordination, and health care provider continuity are essential pillars for successful transition in SCD care. They build a compelling case for integrating standardized assessments with individualized, longitudinal support strategies to ensure that young adults remain engaged in adult care and maintain disease stability over time.
The transition period has implications for SSA eligibility determination as well. For children with SSA benefits, there may need to be a redetermination of SSA benefits according to adult criteria. Some children may become adults who function independently and no longer require SSA benefits. Some young adults may require support for the first time and become eligible for SSA benefits. People with SCD and providers alike have challenges navigating these differences in child-based versus adult-based SSA criteria.
Challenges of Fragmented Care
Systems Barriers to Specialty Care
The health care barriers faced by individuals living with SCD parallel the broader health care system barriers in the United States. Access to health care in the United States is socially determined, such that age, race, gender, and geographic location are factors that prevent individuals from receiving necessary health care services (Butkus et al., 2020). Numerous studies have documented that these disparities prevent access to routine and specialized health care services for individuals living at the margins of society. It is notable that only about one-third of people living with SCD in the United States are covered by commercial health insurance (Johnson et al., 2023), about half are enrolled in Medicaid, and about 11 percent are enrolled in Medicare (CMS, 2024). In contrast, about 65 percent of the U.S. population was covered by private insurance, while Medicaid and Medicare each covered about 19 percent of people in the United States in 2023 (Keisler-Starkey and Bunch, 2024).4
___________________
4 Numbers do not sum to 100 because of dual enrollment.
Such differences in coverage can affect individuals’ access to specialty care. One study found that 43 percent of commercially insured individuals with SCD had visited a hematologist/oncologist in the past 12 months compared with just 7 percent of those covered by Medicaid (Ballas et al., 2018). A survey of current and former Medicaid directors identified low reimbursement rates as a prominent factor discouraging physicians, specialists in particular, from treating individuals with SCD who are enrolled in Medicaid (Sickle Cell Disease Partnership, 2024). Even for individuals with commercial health insurance, high out-of-pocket costs may restrict their access to health care. A study of lifetime medical costs among commercially insured nonelderly individuals with SCD found that their out-of-pocket costs were four times higher than for matched controls (Johnson et al., 2023). Furthermore, the barriers that individuals living with SCD face are exacerbated by the shortage of clinicians in the broader health care system (Abayasekara, 2015; Zhang et al., 2020). These include national shortages of the specialists from whom individuals living with SCD may have to receive care over the lifespan, such as hematologists, neurologists, and nephrologists (Lederer and Lebowitz, 2020; Majersik et al., 2021; Sharma et al., 2019).
Limited Availability of Specialists
Because of the complex nature of the disease, individuals with SCD often require multidisciplinary care involving specialists in many disciplines (HHS, 2020a). Although such specialists are available to individuals with SCD, the management of their care often is challenging because of the complexity of the disease, pain management, and psychosocial factors. The national shortage of SCD-trained hematologists and primary care providers results in poor implementation and coordination of recommendations for chronic SCD care and decreased access and quality of care for individuals living with the disease, particularly adults. As a result, individuals with SCD must often use emergency departments as a safety net (Giroir and Collins, 2020). In addition, pediatric hematologists trained in SCD may have to care for adult patients with the disease to compensate for the lack of adult hematologists with SCD training. Similarly, acute care for individuals with SCD may be driven by emergency department physicians or hospitalists, who are not trained in the management of SCD.
Compared with their urban counterparts, individuals with SCD living in rural areas are at an even greater disadvantage from a lack of coordinated care. These individuals have a higher rate of acute care use and readmission, have greater dissatisfaction with their care, and many times experience wait times in the emergency department. Even when there are specialists, the care is often not well coordinated, thus limiting the ability to
obtain transportation, insurance, and coordination of care among providers (HHS, 2020a; Smeltzer et al., 2021).
Lack of Training in Sickle Cell Disease
Health care providers’ knowledge about SCD varies widely, often falling short of what is necessary to deliver optimal care to individuals living with the condition. Studies reveal that many primary care providers lack confidence in managing SCD-related complications, especially chronic and neuropathic pain. One study, for example, found that most primary care providers surveyed reported low confidence in delivering ambulatory care and managing SCD-specific issues, including chronic pain (Whiteman et al., 2015). That study highlighted the fact that comfort with SCD care increases with prior experience and exposure during residency, underscoring the need for continuing education to close these knowledge gaps. Unfortunately, the providers were using outdated information learned during residency training. Similarly, in a pilot study of advanced practice registered nurses, there were widespread deficits in core competencies related to SCD management, especially in handling acute complications such as stroke, anemia, and acute chest syndrome (Vick et al., 2024). Many of the advanced practice registered nurses were also unfamiliar with recommended laboratory monitoring and therapeutic interventions such as blood transfusions and chelation therapy.
Efforts to improve provider knowledge through telementoring programs, such as the SCD Training and Mentoring Program (Project STAMP) that was designed to engage primary care providers in SCD care through virtual education, struggled with low participation (Shook et al., 2025). Despite a multipronged recruitment strategy, few primary care providers attended the Project STAMP sessions, suggesting a lack of awareness, persistent discomfort in managing SCD outside of specialty care settings, lack of willingness or interest, or lack of time and resources to participate. This gap in knowledge and engagement continues to be a critical barrier to improving outcomes for individuals with SCD and highlights the urgent need for targeted provider education and support mechanisms.
Another study identified additional gaps in internal medicine trainees’ and hospitalists’ baseline knowledge and comfort level with SCD management. In a sample of 30 physicians, only half of the providers reported feeling comfortable managing patients with SCD, despite 90 percent of them having had prior experience with SCD patients and 70 to 75 percent reporting they felt comfortable managing acute pain and chronic illnesses (Qaddour et al., 2023).
Emergency department providers also face challenges in delivering high-quality care to patients with SCD, including insufficient training, lack
of confidence, and systemic issues such as overcrowded emergency departments and limited time (Linton et al., 2020; Masese et al., 2019). Furthermore, stigmatizing beliefs and skepticism about patient-reported pain can negatively influence clinical decisions, leading to delayed or inadequate treatment. To address these issues, targeted educational interventions, such as guideline-based programs and specialist-led telementoring, are recommended strategies for improving provider competence and adherence to best practices (Zeppieri et al., 2019).
Hematologists are the specialists best equipped with the training and expertise to manage the complex, lifelong care needs of individuals with SCD. However, despite an increase in the number of adult patients with SCD, there remains a limited number of adult hematologists who are willing or equipped to provide comprehensive SCD management. This mismatch stems in part from the structure of current hematology/oncology training programs, which largely emphasize malignant hematology and solid tumor oncology over benign conditions such as SCD. A national survey found that fellows intending to pursue hematology-only careers were significantly more likely to report meaningful mentorship, research experiences, and outpatient exposure in hematology—factors essential for influencing specialty choice. However, most hematology/oncology fellows do not receive this type of targeted preparation in SCD care during training, which contributes to the insufficient adult SCD workforce (Masselink et al., 2019). Addressing both the quantity and quality of SCD-trained hematologists is essential to ensuring that patients receive the specialized, comprehensive care they need.
The shortage of hematologists experienced in managing adults with SCD is a significant barrier to high-quality care. In California’s Inland Empire, for example, adults with SCD face limited access to hematologists familiar with their condition, which contributes to inadequate care and poorer health outcomes (Chiruvolu et al., 2019). To address this gap, a pilot adult SCD hematology clinic was established and demonstrated promising results: individuals who adhered to clinic follow-ups and individualized treatment plans experienced reduced hospital admissions, fewer emergency department visits, and a decreased use of opioids. This illustrates that access to knowledgeable providers who can offer disease-modifying therapies and to ongoing education can markedly improve outcomes for this population.
However, even when hematologists are available, many report feeling unprepared or unwilling to care for adults with SCD. In a study exploring their experiences, several hematologists acknowledged the complexity of SCD management and cited systemic challenges—including a lack of institutional support and difficulty coordinating multidisciplinary care—as reasons for their hesitance (Yui et al., 2019). Some hematologists also expressed discomfort managing pain in SCD patients because of stigma and
concerns about prescribing opioids. As with other complex conditions, lack of support staff and reimbursement models that reward productivity (seeing patients quickly) over longitudinal comprehensive care also may dissuade hematologists and other health care providers from caring for individuals with SCD (Burke and Dreslin, 2023; Loeb et al., 2016). Together, these findings point to multiple issues: the numeric shortage of adult hematologists, a readiness gap among those in practice, and disincentives to provide comprehensive care for individuals with SCD.
Collectively the challenges of fragmented care, including variability in the quality of SCD care across health care providers, institutions, and geographical areas experienced by people with SCD, affect these individuals’ quality of life and health outcomes.
CHALLENGES OF CAREGIVING IN SICKLE CELL DISEASE
Chronic illness has a severe impact on any family facing the responsibility of caring for a loved one and trying to maintain employment, other family responsibilities, and overall day-to-day living. Although the burden of care is tremendous for all family members living with SCD, the burden is greatest for families of children with SCD (Campbell et al., 2023). One study emphasized the significant caregiving time and emotional strain experienced by mothers, particularly during hospitalizations and emergency department visits (Moskowitz et al., 2007). For children living with SCD, the disease increases their chance of missing school, negatively affects their social life, and has a negative financial effect on their family and their overall well-being.
Caregiving for individuals with SCD imposes significant physical, emotional, and socioeconomic burdens on families, particularly caregivers of children (Odame et al., 2022). Caregivers must constantly monitor symptoms, manage unpredictable pain crises, and navigate complex health care systems, often with limited resources and support. Daily caregiving tasks include managing medication, monitoring symptoms, and providing comfort during painful episodes, which can lead to caregiver stress and feelings of guilt and self-blame (Owoo and Tadros, 2021). Using an intergenerational lens highlights the fact that caregiving behaviors and coping mechanisms are often passed down through families affected by SCD, adding layers of emotional complexity and highlighting the need for family-based therapeutic support (Owoo and Tadros, 2021).
Beyond the emotional challenges, the burden of SCD caregiving extends into financial and occupational domains. Frequent medical appointments, hospitalizations, and crises contribute to employment loss and absenteeism among caregivers, compounding the economic vulnerability of families already disproportionately affected by poverty (Gordon et al., 2024).
Studies show that poverty and parenting stress are intertwined, with financial strain exacerbating caregiver stress and negatively affecting the health-related quality of life of children with SCD (Moody et al., 2024). Together, these findings underscore the profound and multifaceted caregiving burden associated with SCD and indicate the need for more systemic support to address social, financial, and health care access barriers for these families.
In addition to the burdens faced by caregivers of children, adults living with SCD themselves experience significant challenges that affect their daily functioning and overall well-being. Adults with SCD often encounter barriers to comprehensive individualized care, including inadequate access to specialized providers, discrimination, and stigma within health care settings (Grismore et al., 2025). These barriers, combined with the persistent pain and complications of the disease, contribute to high rates of employment loss and absenteeism, further exacerbating the socioeconomic impact of living with SCD (Gordon et al., 2024). As individuals transition from pediatric to adult care, gaps in coordinated services and support can worsen health outcomes and increase the burden of managing this lifelong condition.
EFFECTS ON SCHOOL AND WORK
The health effects of SCD for people living with the disease interfere with their ability to attend and participate fully in school, work, recreation, and social life. In addition, the sporadic nature of SCD affects their ability to plan ahead, predict, and participate in life events, including education or large social events.
Effects of Sickle Cell Disease on School in Children
Children living with SCD face significant health challenges that directly affect their educational attainment and school experience. Campbell and colleagues (2023) found that the frequency of vaso-occlusive crises was associated with lower scores for recent and general school experiences among children who were enrolled in school at the time of the survey. Frequent pain episodes, hospitalizations, and complications such as anemia and fatigue contribute to high rates of school absenteeism among students with SCD (Eaton et al., 1995; Heitzer et al., 2021; Schwartz et al., 2009). For example, one study found that children with more frequent hospitalizations for painful crises missed substantially more school days, which in turn was associated with lower academic achievement (Eaton et al., 1995). Similarly, another study reported that over 35 percent of adolescents with SCD missed more than a month of school per year, and health-related factors such as pain frequency were significant predictors of absenteeism (Schwartz et al., 2009). Payal Desai, director of the Adult Sickle Cell
Enterprise at Atrium Health, told the committee that the “sporadic nature [of SCD], especially for young individuals, can interrupt their life and their schooling.”5 She continued to emphasize that SCD can significantly affect the ability of youths to predict and participate in events, including education or large social events.
“SCD really impacted my childhood a lot! I couldn’t do everything I wanted as the other kids could, and after the stroke I especially was limited. I missed a lot of school due to doctors’ appointments, SCD crises, hospital stays, treatments, and tests given by doctors. It was rough. I also had to keep drinks in the nurse’s office and go rehydrate after gym class. Childhood was tough.”
—Tristan L., adult living with SCD6
“When I was in high school, I wanted to play football; however, I was not able to do so because my body could not handle the pressure that was being put on me. I wanted to join the military, but that was an immediate no. I even wanted to be a police officer; I passed the test, but, again, my body could not endure. The same goes for my children. My son wants to run track and play basketball; however, SCD has caused him pulmonary issues, and he cannot afford to get sick.”
—Adult and parent of a child living with SCD7
Within the United States, children with SCD consistently perform below normative expectations in school and demonstrate higher rates of grade retention and absenteeism than their peers (Eaton et al., 1995; Heitzer et al., 2021; Schatz, 2004; Schatz et al., 2001). A meta-analysis of academic performance among children with SCD in the United States found that children with SCD scored “below normative expectations on measures of reading, mathematics, and spelling” (Heitzer et al., 2021). Reading and mathematics performance were highly associated with overall intelligence quotient, and stroke or silent cerebral infarct status was associated with decreased academic performance (Heitzer et al., 2021). Children with SCD were more than twice as likely to have an individual educational plan as those in a nationwide sample of African American students, and 27 percent of students with SCD, on average, were retained in at least one grade
___________________
5 Presented at “Functional Outcomes of Sickle Cell Disease: The Whole Person Experience – public webinar” on February 21, 2025.
6 Call for Perspectives Follow Up, submitted July 15, 2025.
7 Excerpt from Call for Perspectives Response.
(Heitzer et al., 2021). These results are consistent with another study showing that standardized academic achievement for students with SCD was one standard deviation below the mean of the population sample (Eaton et al., 1995).
The results of a randomized controlled trial highlight the challenges of supporting school functioning for children with SCD through family-based interventions. Although the families in this study found the approach acceptable, there were no significant improvements in school absences, accommodations, or academic skills compared with controls (Daniel et al., 2015). Another study that emphasized the perspectives of students themselves found that children with SCD often feel that teachers lack knowledge about their condition. The students recommended better communication, tailored support, and practical accommodations to help manage their health and academics at school (Haridasa et al., 2019).
The lack of knowledge among school personnel about SCD can contribute to inconsistent or inadequate documentation of students’ needs, which may limit access to necessary accommodations and formal support plans (Daniel et al., 2015; Haridasa et al., 2019).
“I’m currently in the process of enrollment for preschool for [my son]. And I’m making sure that the school district understands his condition as well as the [staff of the school] that he attends. He’s also on the [autism] spectrum, so he has an [individualized education program (IEP)].…I made the district put his sickle cell in the IEP as well. The school district isn’t aware that SCD does play a part in [the education of] a person living with SCD. I had to explain that and get a letter from his medical team to back me up and state how SCD could impact his development and how [the school district has] to take his SCD into consideration.”
—Parent of a child living with SCD8
Effects of Sickle Cell Disease on Work in Adults
Numerous studies have shown that SCD significantly affects the ability of adults to participate fully in the workforce as a result of the many physical and psychosocial challenges associated with the condition (Bediako and Orringer, 2004; Gil et al., 2004; Gordon et al., 2024; Holdford et al., 2021; Idowu et al., 2018; Rizio et al., 2020; Sanger et al., 2016). Frequent pain episodes, fatigue, complications such as organ damage, the need to attend frequent medical appointments, cognitive deficits, and chronic disability often result in absenteeism, presenteeism (coming to work when not
___________________
8 Excerpt from Call for Perspectives Response.
fully functional), reduced productivity, and difficulty maintaining consistent employment (Gordon et al., 2024). Adults with SCD may face workplace discrimination or stigma resulting from misconceptions about the disease, further complicating their ability to secure stable positions (Bulgin et al., 2018).
“The stress of trying to keep a job while managing fatigue, pain, and unexpected hospitalizations is immense. I’m constantly trying to prove I’m capable—while inside, I’m exhausted and in pain. I’ve had to leave jobs because I physically couldn’t keep up anymore. I’ve missed critical work opportunities because of pain crises or sudden hospitalizations that I couldn’t plan for or prevent. And when I’m not in the hospital, I’m recovering at home—often in silence—because the pain and fatigue don’t stop when the [intravenous lines] come out.”
—Teanika Hoffman, founder and executive director, Sickle Cell Coalition of Maryland9
One study found that individuals with SCD had a 31.9 percent absenteeism rate, 44.8 percent presenteeism rate, and 63.7 reduction in work productivity (Drahos et al., 2023). In another study, 6 percent of the participants reported losing a job in the previous year, and 10.3 percent reported losing a job in the previous 5 years because of being hospitalized for SCD symptoms (Gordon et al., 2024). The same study found that 17.5 percent of the participants reported missing more than 10 days of work in the previous year because of their SCD symptoms. Participants who did not live with a partner reported missing more days of work and more employment loss than those who lived with a partner.
Beyond the physical toll, the financial strain of living with SCD adds another layer of complexity to work-related challenges. One study, for example, found that only 30 percent of adults living with SCD were employed or self-employed, and, of those, absenteeism and presenteeism attributable to pain events led to lost wages of over $15,000 annually, based on a mean hourly wage of $25.53 (Holdford et al., 2021). Many adults with SCD report that they depend on family for financial support because of work limitations, with about 58 percent of those surveyed reporting having trouble paying their bills or insufficient funds to cover the costs of managing their disease (Drahos et al., 2025; Gordon et al., 2024).
Efforts to address these challenges should incorporate supportive employment policies and advocacy for workplace accommodations (Job Accommodation Network, n.d.). PROs (described above) could play a pivotal role in informing such interventions, as they provide critical insights
___________________
9 Call for Perspectives Follow Up, submitted July 18, 2025.
into how SCD affects daily functioning in the context of employment. By integrating these perspectives into workplace policy, a more accommodating system could be developed to ease the work-related burdens for adults navigating life with SCD and improve their financial situation.
SUMMARY AND CONCLUSIONS
SCD is a complex and progressive disorder that may affect any organ system in the body. Newborn screening for SCD has enabled early diagnosis and treatment that can prevent severe childhood complications. Research has shown that a comprehensive multidisciplinary approach to SCD care decreases emergency department encounters and hospitalizations and improves care for children with SCD. Although children with SCD now survive into adulthood, adults with SCD may experience an increased number of complications, which can have a cumulative effect on functioning across the lifespan. Over time, individuals are weathered, both by the progressive nature of the disease and by chronic exposure to the psychological, social, and economic toll of navigating life with the illness.
To understand the overall effect of SCD on an individual’s quality of life, well-being, and functional status, it is necessary to assess the cumulative burden of SCD across all body systems while taking account of the complex social context in which the individual lives. PROMs and functional status questionnaires are important tools for assessing an individual’s ability to perform daily activities and understanding the effects of pain and other symptoms on that person’s functioning, and they can be used to track the progression of the disease and the effectiveness of treatments over time.
A life-course approach to health involves acting early in a person’s life and then appropriately during life’s transitions. The transition from childhood to adulthood is particularly complex for individuals with SCD because they must often navigate the transfer of multiple services and supports for their conditions in addition to the typical changes faced by anyone transitioning from childhood to adulthood. The transition from pediatric to adult health care for individuals with SCD is a complex process with high stakes for long-term health outcomes. Adolescents and young adults who are better supported during the transition process may have better outcomes, which may have longitudinal implications for the risk of functional impairments over time. Nevertheless, access to care for adults with SCD remains lower than that for other diseases. Despite efforts to introduce new ways of treating adults living with SCD, children with SCD generally receive a higher quality of care because of increased access to comprehensive sickle cell care compared to adults living with SCD.
Just as children with SCD consistently perform below normative expectations in school and demonstrate higher rates of grade retention and
absenteeism than their peers, adults with SCD often experience work-related absenteeism and presenteeism, reduced productivity, and difficulty maintaining consistent employment. Workplace discrimination or stigma resulting from misconceptions about the disease may further complicate an individual’s ability to secure stable positions.
Because of SCD’s chronic and multisystem nature, a focus on a single set of symptoms or on the effects on a single body system is unlikely to capture the full burden or severity of disease experienced by individuals living with SCD, including effects on their day-to-day functioning. It is important, therefore, to consider the cumulative burden of SCD over time across all body systems.
Based on its review of the literature and its expert assessment, the committee reached the following conclusions:
Conclusion 7-1: Sickle cell disease (SCD) is a complex and progressive disorder that potentially affects multiple organ systems and needs to be understood over the life course.
Conclusion 7-2: Assessment of the cumulative burden of SCD across all body systems is necessary to understand the overall effect of the condition on individuals’ quality of life, well-being, and functional status. Health-related quality of life and functioning need to be measured over time.
Conclusion 7-3: Early diagnosis of SCD through universal newborn screening increases the potential for early childhood interventions.
Conclusion 7-4: Access to coordinated comprehensive SCD care across the life course can lead to better outcomes. Unaddressed needs, including during transitions, can exacerbate and accelerate complications, leading to disability.
- Most individuals with SCD, especially adults, do not have access to such coordinated care.
- The transition from pediatric to adult status in individuals with SCD is a particularly vulnerable and complex time, representing the intersection of many factors and resulting in increased morbidity and mortality and potentially affecting an individual’s disability status.
Conclusion 7-5: Special support is necessary to keep children with SCD engaged in the health care system into and through adulthood.
Conclusion 7-6: SCD increases absences and negatively affects performance at school and work.
REFERENCES
Abayasekara, A. 2015. Addressing clinician workforce shortages in underserved areas. Journal of Health Care for the Poor and Underserved 26(1):1–4.
Ameringer, S., R. K. Elswick, and W. Smith. 2014. Fatigue in adolescents and young adults with sickle cell disease. Journal of Pediatric Oncology Nursing 31(1):6–17.
Aronson, P. L., S. A. Nolan, P. Schaeffer, K. D. Hieftje, K. A. Ponce, and C. L. Calhoun. 2024. Perspectives of adolescents and young adults with sickle cell disease and clinicians on improving transition readiness with a video game intervention. Journal of Pediatric Hematology/Oncology 46(2):e147–e155.
Baldwin, Z., B. Jiao, A. Basu, J. Roth, M. A. Bender, Z. Elsisi, K. M. Johnson, E. Cousin, S. D. Ramsey, and B. Devine. 2022. Medical and non-medical costs of sickle cell disease and treatments from a U.S. perspective: A systematic review and landscape analysis. PharmacoEconomics - Open 6(4):469–481.
Ballas, S. K., J. Kanter, I. Agodoa, R. Howard, S. Wade, V. Noxon, and C. Dampier. 2018. Opioid utilization patterns in United States individuals with sickle cell disease. American Journal of Hematology 93(10):E345–E347.
Bediako, M., and E. Orringer. 2004. Daily mood and stress predict pain, health care use, and work activity in African American adults with sickle-cell disease. Health Psychology 23(3):267–274.
Ben-Shlomo, Y., and D. Kuh. 2002. A life course approach to chronic disease epidemiology: Conceptual models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology 31(2):285–293.
Blinder, M. A., F. Vekeman, M. Sasane, A. Trahey, C. Paley, and M. S. Duh. 2013. Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs. Pediatric Blood & Cancer 60(5):828–835.
Blum, R. W., D. Garell, C. H. Hodgman, T. W. Jorissen, N. A. Okinow, D. P. Orr, and G. B. Slap. 1993. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health 14(7):570–576.
Brandow, A. M., C. P. Carroll, S. Creary, R. Edwards-Elliott, J. Glassberg, R. W. Hurley, A. Kutlar, M. Seisa, J. Stinson, J. J. Strouse, F. Yusuf, W. Zempsky, and E. Lang. 2020. American Society of Hematology 2020 guidelines for sickle cell disease: Management of acute and chronic pain. Blood Advances 4(12):2656–2701.
Brousseau, D. C., P. L. Owens, A. L. Mosso, J. A. Panepinto, and C. A. Steiner. 2010. Acute care utilization and rehospitalizations for sickle cell disease. JAMA 303(13):1288–1294.
Bulgin, D., P. Tanabe, and C. Jenerette. 2018. Stigma of sickle cell disease: A systematic review. Issues in Mental Health Nursing 39(8):675–686.
Burke, C., and S. Dreslin. 2023. Supporting individuals with complex needs: Care delivery that provides the right services and supports in the right settings. Rockefeller Institute of Government. https://rockinst.org/wp-content/uploads/2023/10/Supporting-IndividualsComplex-Needs.pdf (accessed October 22, 2025).
Butkus, R., K. Rapp, T. G. Cooney, L. S. Engel, and the Health and Public Policy Committee of the American College of Physicians. 2020. Envisioning a better U.S. health care system for all: Reducing barriers to care and addressing social determinants of health. Annals of Internal Medicine 172(2 Suppl):S50–S59.
Campbell, A., A. Rizio, K. McCausland, S. Iorga, G. Yen, J. Paulose, and S. Lee. 2023. The burden of sickle cell disease on children and their caregivers: Caregiver reports of children’s health-related quality of life and school experiences, caregiver burden, and their association with frequency of vaso-occlusive crises. Patient Related Outcome Measures 14:369–381.
Cella, D., S. Yount, N. Rothrock, R. Gershon, K. Cook, B. Reeve, D. Ader, J. F. Fries, B. Bruce, M. Rose, and P. C. Group. 2007. The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care 45(5 Suppl 1):S3–S11.
Cheminet, G., A. Corbasson, M. Charmettan, W. Namaoui, D. Khimoud, E. Flamarion, A. Michon, E. Lafont, J. Pouchot, B. Ranque, and J. B. Arlet. 2024. Assessment of fatigue in adult patients with sickle cell disease: Use of the Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT–Fatigue) questionnaire. British Journal of Haematology 205(1):335–342.
Cheng, T. L., and K. B. Mistry. 2019. The uniqueness and importance of children in addressing health disparities across the life course: Implications for research. Epidemiology 30(Suppl 2):S60–S64.
Cheng, T. L., and K. B. Mistry. 2023. Clarity on disparity: Who, what, when, where, why, and how. Pediatric Clinics of North America 70(4):639–650.
Childerhose, J. E., R. M. Cronin, M. D. Klatt, and A. Schamess. 2023. Treating chronic pain in sickle cell disease—The need for a biopsychosocial model. New England Journal of Medicine 388(15):1349–1351.
Chiruvolu, N., A. Patel, C. Rowley, M. J. Treadwell, E. P. Vichinsky, and Z. Pakbaz. 2019. A pilot adult sickle cell hematology clinic in California’s Inland Empire improves patient outcome. Blood 134(Suppl 1):3470.
CMS (Centers for Medicare & Medicaid Services). 2023. Care coordination. https://www.cms.gov/priorities/innovation/key-concepts/care-coordination (accessed October 8, 2025).
CMS. 2024. Sickle cell disease disparities in people enrolled in Medicare fee-for-service. https://www.cms.gov/files/document/sickle-cell-disease-disparities.pdf (accessed September 4, 2025).
Curtis, S., and A. M. Brandow. 2017. Responsiveness of Patient-Reported Outcome Measurement Information System (PROMIS) pain domains and disease-specific patient-reported outcome measures in children and adults with sickle cell disease. Hematology: The American Society of Hematology Education Program 2017(1):542–545.
Dampier, C., V. Barry, H. E. Gross, Y. Lui, C. D. Thornburg, D. A. DeWalt, and B. B. Reeve. 2016a. Initial evaluation of the pediatric PROMIS health domains in children and adolescents with sickle cell disease. Pediatric Blood & Cancer 63(6):1031–1037.
Dampier, C., B. Jaeger, H. E. Gross, V. Barry, L. Edwards, Y. Lui, D. A. DeWalt, and B. B. Reeve. 2016b. Responsiveness of PROMIS pediatric measures to hospitalizations for sickle pain and subsequent recovery. Pediatric Blood & Cancer 63(6):1038–1045.
Daniel, L. C., Y. Li, K. Smith, R. Tarazi, M. R. Robinson, C. A. Patterson, K. Smith-Whitley, M. Stuart, and L. P. Barakat. 2015. Lessons learned from a randomized controlled trial of a family-based intervention to promote school functioning for school-age children with sickle cell disease. Journal of Pediatric Psychology 40(10):1085–1094.
Drahos, J., A. Boateng-Kuffour, M. Calvert, A. Valentine, A. Mason, N. Li, Z. Pakbaz, F. Shah, N. Ainsworth, and A. Martin. 2023. PCR85 sustained humanistic burden and work impact in adults with sickle cell disease with recurrent vaso-occlusive crises: Results from a global longitudinal survey. Value in Health 26(6):S327.
Drahos, J., A. Boateng-Kuffour, M. Calvert, A. Valentine, A. Mason, N. Li, Z. Pakbaz, F. T. Shah, N. Ainsworth, and A. P. Martin. 2025. Health-related quality of life and economic impacts in adults with sickle cell disease with recurrent vaso-occlusive crises: Findings from a prospective longitudinal real-world survey. Quality of Life Research 34(7):2019–2029.
Eaton, M. L., J. S. Haye, F. D. Armstrong, C. H. Pegelow, and M. Thomas. 1995. Hospitalizations for painful episodes: Association with school absenteeism and academic performance in children and adolescents with sickle cell anemia. Issues in Comprehensive Pediatric Nursing 18(1):1–9.
Esham, K. S., A. M. Rodday, H. P. Smith, F. Noubary, R. A. Weidner, R. J. Buchsbaum, and S. K. Parsons. 2020. Assessment of health-related quality of life among adults hospitalized with sickle cell disease vaso-occlusive crisis. Blood Advances 4(1):19–27.
Fasipe, T., D. Dongarwar, E. Lopez, R. Brown, M. Abadom, D. H. Mahoney, and H. M. Salihu. 2021. Hospital use and mortality in transition-aged patients with sickle cell disease. Hospital Pediatrics 11(12):1303–1310.
Forde, A. T., D. M. Crookes, S. F. Suglia, and R. T. Demmer. 2019. The weathering hypothesis as an explanation for racial disparities in health: A systematic review. Annals of Epidemiology 33:1–18.e3.
Forrest, C. B., L. Simpson, and C. Clancy. 1997. Child health services research. Challenges and opportunities. JAMA 277(22):1787–1793.
Galadanci, N., S. Phillips, A. M. Schlenz, N. Ivankova, and J. Kanter. 2023. Understanding gaps in current practices of newborn screening follow-up for sickle cell disease in the United States. Blood 142(Suppl 1):2529.
Gil, K. M., J. W. Carson, L. S. Porter, C. Scipio, S. M. Bediako, and E. Orringer. 2004. Daily mood and stress predict pain, health care use, and work activity in African American adults with sickle-cell disease. Health Psychology 23(3):267–274.
Giroir, B. P., and F. Collins. 2020. The state of sickle cell disease care in the United States: How can emergency medicine contribute? Annals of Emergency Medicine 76(3):S1–S3.
Gordon, R. D., R. L. Welkie, N. Quaye, J. S. Hankins, A. A. Kassim, A. A. Thompson, M. Treadwell, C. J. Lin, and R. M. Cronin. 2024. Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease. Blood Advances 8(5):1143–1150.
Goshua, G., C. Calhoun, S. Ito, L. P. James, A. Luviano, L. Krishnamurti, and A. Pandya. 2023. Distributional cost-effectiveness of equity-enhancing gene therapy in sickle cell disease in the United States. Annals of Internal Medicine 176(6):779–787.
Grismore, C., L. R. Roberts, Z. D. Lister, A. Jain, J. Silvestre, J. Dickerson, and S. B. Montgomery. 2025. Barriers to care for adults with sickle cell disease: A qualitative descriptive study. Health Expectations 28(3):e70310.
Guy, M., R. Qayyum, P. Derby, N. Carter, J. Keiser, A. Ulbing, D. Sop, and W. R. Smith. 2019. Development and validation of a functional status-based pain assessment tool. Blood 134(Suppl 1):416.
Haridasa, N., M. R. DeBaun, M. Sanger, and T. L. Mayo-Gamble. 2019. Student perspectives on managing sickle cell disease at school. Pediatric Blood & Cancer 66(2):e27507.
HealthMeasures. 2025. ASCQ-Me list of measures. https://www.healthmeasures.net/explore-measurement-systems/ascq-me/intro-to-ascq-me/list-of-measures (accessed September 17, 2025).
Heitzer, A. M., L. Hamilton, C. Stafford, J. Gossett, L. Ouellette, A. Trpchevska, A. A. King, G. Kang, and J. S. Hankins. 2021. Academic performance of children with sickle cell disease in the United States: A meta-analysis. Frontiers in Neurology 12:786065.
HHS (U.S. Department of Health and Human Services). 2020a. Human-centered design report – Opportunity area 1: SCD care is difficult to access. https://health.gov/sites/oash/files/2025-01/health-plus-scd-hcd-report-scd-care-access.pdf (accessed August 7, 2025).
HHS. 2020b. Human-centered design report – Opportunity area 3: People with SCD struggle with transition to adulthood. https://health.gov/sites/oash/files/2025-01/health-plus-scd-hcd-report-transition-adulthood-journey.pdf (accessed August 7, 2025).
Holdford, D., N. Vendetti, D. M. Sop, S. Johnson, and W. R. Smith. 2021. Indirect economic burden of sickle cell disease. Value in Health 24(8):1095–1101.
Howell, K. E., A. C. Saulsberry-Abate, J. G. Mathias, J. S. Porter, J. R. Hodges, K. I. Ataga, S. Anderson, V. Nolan, and J. S. Hankins. 2021. Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease. Pediatric Blood & Cancer 68(10):e29209.
Idowu, M., T. H. Chung, and K. Yu. 2018. Association between employment status and hospitalization of patients with sickle cell disease: A retrospective, observational pilot study. Blood 132(Suppl 1):4930.
Jagtiani, A., E. Chou, S. E. Gillespie, K. Liu, L. Krishnamurti, D. McClish, W. R. Smith, and N. Bakshi. 2024. High-impact chronic pain in sickle cell disease: Insights from the Pain in Sickle Cell Epidemiology Study (PiSCES). Pain 165(10):2364–2369.
Jayakumar, J., M. Ginjupalli, S. Rajarajan, K. Babu, and A. M. Roy. 2024. Palliative care utilization in sickle cell disease: A nationwide analysis of its trends, and impacts. Blood 144(Suppl 1):5317.
Jiao, B., A. Basu, J. Roth, M. Bender, I. Rovira, T. Clemons, D. Quach, S. Ramsey, and B. Devine. 2021. The use of cost-effectiveness analysis in sickle cell disease: A critical review of the literature. Pharmacoeconomics 39(11):1225–1241.
Job Accommodation Network. n.d. Sickle cell anemia. https://askjan.org/disabilities/Sickle-Cell-Anemia.cfm#spy-scroll-heading-2 (accessed October 8, 2025).
Johnson, K. M., B. Jiao, S. D. Ramsey, M. A. Bender, B. Devine, and A. Basu. 2023. Lifetime medical costs attributable to sickle cell disease among nonelderly individuals with commercial insurance. Blood Advances 7(3):365–374.
Kanter, J., W. R. Smith, P. C. Desai, M. Treadwell, B. Andemariam, J. Little, D. Nugent, S. Claster, D. G. Manwani, J. Baker, J. J. Strouse, I. Osunkwo, R. W. Stewart, A. King, L. M. Shook, J. D. Roberts, and S. Lanzkron. 2020. Building access to care in adult sickle cell disease: Defining models of care, essential components, and economic aspects. Blood Advances 4(16):3804–3813.
Kanter, J., M. Frei-Jones, D. Manwani, M. Treadwell, M. Madisetti, R. Miller, S. A. Jacob, S. Saif-Ur-Rehman, A. R. W. O’Brien, and S. Lanzkron. 2025. The development of consensus recommendation to improve practice harmonization for sickle cell disease through the National Alliance of Sickle Cell Centers. Journal of Sickle Cell Disease 2(1). doi:10.1093/jscdis/yoaf011.
Karkoska, K. A., and P. T. McGann. 2024. Trends in sickle cell disease mortality: 1979-2020. Pediatrics 154(6):e2024067341.
Kavanagh, P. L., T. A. Fasipe, and T. Wun. 2022. Sickle cell disease: A review. JAMA 328(1):57–68.
Keisler-Starkey, K., and L. N. Bunch. 2024. Health insurance coverage in the United States: 2023: Current population reports. U.S. Government Publishing Office: Washington, DC. https://www2.census.gov/library/publications/2024/demo/p60-284.pdf (accessed September 4, 2025).
Keller, S. D., M. Yang, M. J. Treadwell, E. M. Werner, and K. L. Hassell. 2014. Patient reports of health outcome for adults living with sickle cell disease: Development and testing of the ASCQ–ME item banks. Health and Quality of Life Outcomes 12(1):125.
Kleinman, A. 1980. Patients and healers in the context of culture: An exploration of the borderland between anthropology, medicine, and psychiatry, Vol. 3. Berkeley, CA: University of California Press.
Lederer, E., and J. Lebowitz. 2020. Current state of the workforce in nephrology. Advances in Chronic Kidney Disease 27(4):281–290.e1.
Lee, S., D. K. Vania, M. Bhor, D. Revicki, S. Abogunrin, and G. Sarri. 2020. Patient-reported outcomes and economic burden of adults with sickle cell disease in the United States: A systematic review. International Journal of General Medicine 13:361–377.
Linton, E. A., D. A. Goodin, J. S. Hankins, J. Kanter, L. Preiss, J. Simon, K. Souffront, P. Tanabe, R. Gibson, L. L. Hsu, A. King, L. D. Richardson, and J. A. Glassberg. 2020. A survey-based needs assessment of barriers to optimal sickle cell disease care in the emergency department. Annals of Emergency Medicine 76(3):S64–S72.
Loeb, D. F., E. A. Bayliss, C. Candrian, F. V. Degruy, and I. A. Binswanger. 2016. Primary care providers’ experiences caring for complex patients in primary care: A qualitative study. BMC Family Practice 17(1):34.
Majersik, J. J., A. Ahmed, I. A. Chen, H. Shill, G. P. Hanes, V. S. Pelak, J. L. Hopp, A. Omuro, B. Kluger, and T. Leslie-Mazwi. 2021. A shortage of neurologists—We must act now: A report from the AAN 2019 Transforming Leaders Program. Neurology 96(24):1122–1134.
Masese, R. V., D. Bulgin, C. Douglas, N. Shah, and P. Tanabe. 2019. Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers’ perspective. PLOS One 14(5):e0216414.
Masselink, L. E., C. E. Erikson, N. T. Connell, L. M. De Castro, G. A. Dent, A. L. Marshall, R. P. Naik, M. Nelson, C. L. O’Connell, A. Rajasekhar, D. Sharma, M. Smith, and A. I. Lee. 2019. Associations between hematology/oncology fellows’ training and mentorship experiences and hematology-only career plans. Blood Advances 3(21):3278–3286.
McClellan, C. B., J. Schatz, C. Sanchez, and C. W. Roberts. 2008. Validity of the Pediatric Quality of Life Inventory for youth with sickle cell disease. Journal of Pediatric Psychology 33(10):1153–1162.
McClish, D. K., L. T. Penberthy, V. E. Bovbjerg, J. D. Roberts, I. P. Aisiku, J. L. Levenson, S. D. Roseff, and W. R. Smith. 2005. Health related quality of life in sickle cell patients: The PiSCES project. Health and Quality of Life Outcomes 3(1):50.
McNulty, R. 2022. Patients with sickle cell disease less likely to receive specialized care. AJMC. https://www.ajmc.com/view/patients-with-sickle-cell-disease-less-likely-to-receive-specialized-care (accessed August 6, 2025).
Minkovitz, C. S., H. Grason, M. Ruderman, and J. F. Casella. 2016. Newborn screening programs and sickle cell disease: A public health services and systems approach. American Journal of Preventive Medicine 51(1 Suppl 1):S39–S47.
Moody, K. L., G. Cain, and J. Worthy. 2024. Poverty and the wellbeing of children with sickle cell disease: The mediating role of parenting stress. Pediatric Blood & Cancer 71(2):e30770.
Morgan, G., E. Back, M. Besser, T. B. Hallett, and G. F. Guzauskas. 2024. The value-based price of transformative gene therapy for sickle cell disease: A modeling analysis. Science Reports 14(1):2739.
Moskowitz, J. T., E. Butensky, P. Harmatz, E. Vichinsky, M. B. Heyman, M. Acree, J. Wrubel, L. Wilson, and S. Folkman. 2007. Caregiving time in sickle cell disease: Psychological effects in maternal caregivers. Pediatric Blood & Cancer 48(1):64–71.
NASEM (National Academies of Sciences, Engineering, and Medicine). 2020. Addressing sickle cell disease: A strategic plan and blueprint for action. Edited by M. McCormick, H. A. Osei-Anto, and R. M. Martinez. Washington, DC: The National Academies Press.
NASEM. 2024. Launching lifelong health by improving health care for children, youth, and families. Edited by T. L. Cheng and J. M. Perrin. Washington, DC: National Academies Press.
Odame, I., A. Anderson, F. Costa, B. Inusa, W. Jastaniah, J. Kunz, Z. al Kadhem, B. Tinga, D. Ba, E. Ingoli, J. James, A. Clark, A. Beaubrun, B. Lartey, and M. de Montalembert. 2022. Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey: Findings on the burden of sickle cell disease and unmet needs as reported by patients and caregivers. HemaSphere 6(Suppl):06–07.
Osunkwo, I., R. Lawrence, M. Robinson, C. Patterson, J. Symanowski, C. Minniti, P. Bryant, J. Williams, J. Eckman, and P. Desai. 2023. Sickle Cell Trevor Thompson Transition Project (ST3P–UP) protocol for managing care transitions: Methods and rationale. Contemporary Clinical Trials 126:107089.
Owoo, F., and E. Tadros. 2021. The lived experiences of caregivers of children with sickle cell disease: A phenomenological study. American Journal of Family Therapy 50(5):510–532.
Oyedeji, C. I., K. Hall, A. Luciano, M. C. Morey, and J. J. Strouse. 2022. The Sickle Cell Disease Functional Assessment (SCD–FA) tool: A feasibility pilot study. Pilot Feasibility Studies 8(1):53.
Panepinto, J. A., S. Torres, C. B. Bendo, T. L. McCavit, B. Dinu, S. Sherman-Bien, C. Bemrich-Stolz, and J. W. Varni. 2013. PedsQL sickle cell disease module: Feasibility, reliability, and validity. Pediatric Blood & Cancer 60(8):1338–1344.
Qaddour, N., I. Rizvi, and M. Farooqui. 2023. Addressing provider-dependent gaps in sickle cell disease care. Blood 142(Suppl 1):7218.
Raphael, J. L., T. L. Rattler, M. A. Kowalkowski, B. U. Mueller, T. P. Giordano, and D. C. Brousseau. 2013. Association of care in a medical home and health care utilization among children with sickle cell disease. Journal of the National Medical Association 105(2):157–165.
Rizio, A. A., M. Bhor, X. Lin, K. L. McCausland, M. K. White, J. Paulose, S. Nandal, R. I. Halloway, and L. Bronté-Hall. 2020. The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease. Quality of Life Research 29(6):1533–1547.
Sanger, M., L. Jordan, S. Pruthi, M. Day, B. Covert, B. Merriweather, M. Rodeghier, M. DeBaun, and A. Kassim. 2016. Cognitive deficits are associated with unemployment in adults with sickle cell anemia. Journal of Clinical and Experimental Neuropsychology 38(6):661–671.
Schatz, J. 2004. Brief report: Academic attainment in children with sickle cell disease. Journal of Pediatric Psychology 29(8):627–633.
Schatz, J., R. T. Brown, J. M. Pascual, L. Hsu, and M. R. DeBaun. 2001. Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease. Neurology 56(8):1109–1111.
Schwartz, L. A., J. Radcliffe, and L. P. Barakat. 2009. Associates of school absenteeism in adolescents with sickle cell disease. Pediatric Blood & Cancer 52(1):92–96.
Scott, J. L., J. Christian, M. Plazas Montana, Y. M. Miller, and R. P. Naik. 2024. Variability in notification of positive newborn screening results for sickle cell trait across the United States. Advances in Hematology 2024:3854629.
Sharma, S., J. T. Efird, C. Knupp, R. Kadali, D. Liles, K. Shiue, P. Boettger, and S. F. Quan. 2015. Sleep disorders in adult sickle cell patients. Journal of Clinical Sleep Medicine 11(3):219–223.
Sharma, D., N. Wallace, E. A. Levinsohn, A. L. Marshall, K. Kayoumi, J. Madero, M. Homer, R. Reynolds, J. Hafler, N. A. Podoltsev, and A. I. Lee. 2019. Trends and factors affecting the U.S. adult hematology workforce: A mixed methods study. Blood Advances 3(22):3550–3561.
Shatola, A., A. M. Brunson, T. H. M. Keegan, T. Wun, and A. Mahajan. 2019. Fragmentation of care for young adults with sickle cell disease in California. Blood 134(Suppl 1):4667.
Sheppard, S., G. Hellemann, J. Lebensburger, and J. Kanter. 2023. Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program. Pediatric Blood & Cancer 70(4):e30160.
Shook, L. M., B. House, C. B. Farrell, R. Stewart, S. Lanzkron, A. A. King, T. Varughese, J. J. Strouse, M. Treadwell, and J. Kanter. 2025. Challenges of engaging primary care providers in specialized telementoring education about sickle cell disease for sickle cell specialists: Results from the Sickle Cell Disease Training and Mentoring Program for Primary Care Providers (STAMP) Project ECHO. AJPM Focus 4(1):100304.
Sick Cells. 2020. Public comments to ICER: ICER’s draft evidence report on crizanlizumab for sickle cell disease. https://sickcells.org/wp-content/uploads/2021/06/Sickle-Cells-Public-Comments-to-ICER_final.pdf (accessed August 6, 2025).
Sickle Cell Disease Partnership. 2024. Medicaid & Sickle Cell Disease Survey: A survey of Medicaid directors about the critical role Medicaid plays in helping Americans with sickle cell disease. https://www.sicklecellpartnership.org/wp-content/uploads/2024/04/Full-Collection-of-Findings-Medicaid-Director-Survey-on-SCD-1.pdf (accessed September 4, 2025).
Singh, S. A., N. Bakshi, P. Mahajan, and C. R. Morris. 2020. What is the future of patient-reported outcomes in sickle-cell disease? Expert Review of Hematology 13(11):1165–1173.
Smeltzer, M. P., K. E. Howell, M. Treadwell, L. Preiss, A. A. King, J. A. Glassberg, P. Tanabe, S. M. Badawy, L. Dimartino, R. Gibson, J. Kanter, L. M. Klesges, and J. S. Hankins. 2021. Identifying barriers to evidence-based care for sickle cell disease: Results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA. BMJ Open 11(11):e050880.
Smith, W. R., L. T. Penberthy, V. E. Bovbjerg, D. K. McClish, J. D. Roberts, B. Dahman, I. P. Aisiku, J. L. Levenson, and S. D. Roseff. 2008. Daily assessment of pain in adults with sickle cell disease. Annals of Internal Medicine 148(2):94–101.
Smith, W. R., D. K. McClish, V. E. Bovbjerg, and H. K. Singh. 2022. Development and validation of the Sickle Cell Stress Scale–Adult. European Journal of Haematology 109(3):215–225.
Smith, W. R., R. Qayyum, A. Ulbing, M. S. Guy, D. M. Sop, and Y. M. Zhang. 2025. Preliminary validity of a daily functional status pain assessment tool. Journal of Sickle Cell Disease 2(1):yoaf006.
Sogutlu, A., J. L. Levenson, D. K. McClish, S. D. Rosef, and W. R. Smith. 2011. Somatic symptom burden in adults with sickle cell disease predicts pain, depression, anxiety, health care utilization, and quality of life: The PiSCES project. Psychosomatics 52(3):272–279.
Stille, C., R. M. Turchi, R. Antonelli, M. D. Cabana, T. I. Cheng, D. Laraque, and J. Perrin. 2010. The family-centered medical home: Specific considerations for child health research and policy. Academic Pediatrics 10(4):211–217.
Swanson, M. E., S. D. Grosse, and R. Kulkarni. 2011. Disability among individuals with sickle cell disease: Literature review from a public health perspective. American Journal of Preventive Medicine 41(6 Suppl 4):S390–S397.
Therrell, B. L., Jr., M. A. Lloyd-Puryear, J. R. Eckman, and M. Y. Mann. 2015. Newborn screening for sickle cell diseases in the United States: A review of data spanning 2 decades. Seminars in Perinatology 39(3):238–251.
Treadwell, M., J. Telfair, R. W. Gibson, S. Johnson, and I. Osunkwo. 2011. Transition from pediatric to adult care in sickle cell disease: Establishing evidence‐based practice and directions for research. American Journal of Hematology 86(1):116–120.
Treadwell, M., S. Johnson, I. Sisler, M. Bitsko, G. Gildengorin, R. Medina, F. Barreda, K. Major, J. Telfair, and W. R. Smith. 2016. Development of a sickle cell disease readiness for transition assessment. International Journal of Adolescent Medicine and Health 28(2):193–201.
Varni, J. W., M. Seid, and P. S. Kurtin. 2001. PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care 39(8):800–812.
Vick, L. L., S. Mitchell, P. Fernandes, A. Tavakoli, K. Samuels, and C. Jenerette. 2024. A pilot study of nurse practitioners’ perceived competencies and attitudes towards patients living with sickle cell disease. Journal for Nurse Practitioners 20(1):104829.
Wallen, G. R., C. P. Minniti, M. Krumlauf, E. Eckes, D. Allen, A. Oguhebe, C. Seamon, D. S. Darbari, M. Hildesheim, L. Yang, J. D. Schulden, G. J. Kato, and J. G. Taylor VI. 2014. Sleep disturbance, depression and pain in adults with sickle cell disease. BMC Psychiatry 14(1):207.
Whiteman, L. N., C. Haywood, Jr., S. Lanzkron, J. J. Strouse, L. Feldman, and R. W. Stewart. 2015. Primary care providers’ comfort levels in caring for patients with sickle cell disease. Southern Medical Journal 108(9):531–536.
WHO (World Health Organization). 2021. The life-course approach: From theory to practice: Case stories from two small countries in Europe. Geneva, Switzerland: World Health Organization.
Wickersham, K. E., R. M. Dawson, K. P. Becker, K. C. Everhart, H. S. Miles, B. E. Schultz, C. M. Tucker, P. J. Wright, and C. M. Jenerette. 2022. Experiences of African Americans living with sickle cell disease. Journal of Transcultural Nursing 33(3):334–345.
Wilkie, D. J., B. Johnson, A. K. Mack, R. Labotka, and R. E. Molokie. 2010. Sickle cell disease: An opportunity for palliative care across the life span. Nursing Clinics of North America 45(3):375–397.
Wood, D., T. Crapnell, L. Lau, A. Bennett, D. Lotstein, M. Ferris, and A. Kuo. 2018. Emerging adulthood as a critical stage in the life course. In C. B. Forrest, N. Halfon, and R. M. Lerner (eds.), Handbook of life course health development. Cham, Switzerland: Springer International Publishing. Pp. 123–143.
Yui, J., F. Sayani, and M. Schapira. 2019. Hematologist experiences and perceptions of outpatient management of adult patients with sickle cell disease. Blood 134(Suppl 1):4710.
Zeppieri, J., D. D. Park, K. Mowatt, M. Sharif, and A. J. Cohen. 2019. Education program to improve the adherence to guidelines for use of blood transfusions in sickle cell disease. Blood 134(Suppl 1):2115.
Zhang, X., D. Lin, H. Pforsich, and V. W. Lin. 2020. Physician workforce in the United States of America: Forecasting nationwide shortages. Human Resources for Health 18(1):8.
This page intentionally left blank.
