Transition, Collaboration, and Costs in Sickle Cell Disease Care: A Literature Review

Well-Defined Transition Phases

Based on the available research, a successful pediatric-to-adult care transition model for sickle cell disease (SCD) involves a multifaceted approach that addresses the unique needs of young adults with SCD.

Calhoun et al. (2022) reported that the transition from pediatric to adult care can be a stressful time for adolescents, as evidenced by a dramatic increase in acute care utilization and increased mortality during the young adult years. Well-defined phases in transition models are essential for ensuring continuity of care, improving patient outcomes, empowering patients, and optimizing resource utilization. Saulsberry et al. (2019) emphasized the importance of the “Six Core Elements of Health Care Transition” from The Center for Health Care Transition Improvement. These elements are: (1) establishing a transition policy; (2) tracking and monitoring progress; (3) assessing transition readiness; (4) planning for adult care; (5) transferring to adult care; and (6) integrating into adult care (Saulsberry et al., 2019). In Smith et al. (2019), an SCD-specific pediatric-to-adult transition program was designed and implemented with the six core elements as a framework. Program outcomes demonstrated structural success and notably improved retention during the transition to adult care. In Porter, Lopez et al. (2017), a study that evaluated current transition programs, findings emphasized the importance of conducting periodic readiness assessments, offering skill-building opportunities tailored to readiness levels, and fostering social support networks to promote and facilitate learning. Continued research and development of innovative SCD transition programs are essential to address the unique challenges faced by young adults living with sickle cell disease.

Focus on Self-Efficacy

Effective transition models empower young adult SCD patients by fostering self-efficacy and self-management.

In a study of adolescents with SCD, Abel et al. (2015), identified the need for educational interventions to enhance transition to adult health care and independent living skills. The study’s findings highlighted the need for educational and life skills training to improve transition skills in adolescents, particularly in health care navigation, money management, vocational skills, and education. Crosby et al. (2020) evaluated a technology-enhanced self-management intervention for young people with SCD that focused on behavioral activation. The results of the study supported the potential of self-management interventions for adolescents and young adults with SCD and showed that behavioral activation skills (the knowledge, confidence, and motivation to manage one’s health) can foster self-efficacy of disease management during the SCD care transition period. Howell et al. (2022) studied the effectiveness of a self-management skills checklist to predict successful care transitions in young adults with SCD. The study’s results emphasized the importance of monitoring adolescents’ self-management skills, their knowledge of SCD, and executive functioning before they transition out of pediatric care.

Collaboration Across Disciplines

Collaboration among specialists from various disciplines is also a crucial component of successful transition models.
In Crosby et al. (2015), a review that outlined the challenges and concerns faced by patients with SCD during the transition from pediatric to adult health care, findings recommended a multidisciplinary, collaborative approach (biological, psychosocial, and sociological) from specialists in multiple disciplines as young adults with SCD transition out of pediatric care. In addition, pediatric providers should work with adult care providers to ensure care continuity for patients transitioning from pediatric to adult care (Howell et al., 2021). This could be accomplished through telemedicine (Howell et al., 2021) or a co-location model (Nolan et al., 2018). This type of collaboration has been shown to increase retention in adult care (Howell et al., 2021) and may be associated with fewer hospitalizations (Nolan et al., 2018). Successful transition models require collaboration among specialists across disciplines to ensure comprehensive care and coordination in the transition from pediatric to adult SCD care.

Research Coordination

One of the primary avenues through which community-based organizations (CBOs) collaborate with SCD health care providers and researchers is through research coordination.

In many of the reviewed studies, CBOs played a role in participant recruitment, communication, event hosting, and other parts of the research process. In Alberts et al. (2020), describing a study designing a mobile health (mHealth) intervention to improve hydroxyurea adherence, CBOs helped to recruit patients and were involved in the phase 1 optimization digital innovation workshop for the application’s design alongside SCD patients and health care providers. In Lee et al. (2021), a study evaluating SCD patient perspectives and experiences on clinical trial participation, CBOs assisted with recruiting participants and disseminating information about the study’s workshops. In Housten et al. (2016), researchers conducting a sickle cell trait testing intervention, initially limited to federally qualified health centers (FQHCs), connected with community organizations and expanded their testing program to hubs such as a church health fair and a public library health screening. When a pharmaceutical company collaborated with a patient organization to understand the priorities of SCD patients and incorporate their perspectives into early drug development, CBOs played the key role of reaching and recruiting diverse patient populations and alleviating participation concerns (Jalowsky et al., 2023). In the literature, CBOs acted as key partners in SCD research by helping to coordinate community participation and facilitating relationships with the SCD community.

Research Participation

CBOs make meaningful contributions to SCD research at other stages of the research process as well.

In a review of factors that researchers should consider for SCD clinical trials, Badawy (2021) emphasized the importance of involving SCD community organizations at all stages of the research process to ensure that research priorities align with the needs of the community. In a study by Cronin et al. (2018) in which researchers adapted SCD medical guidelines using a community-engaged research process, the researchers included the participation and feedback of CBOs (as well as health care providers, people with SCD, and their caregivers) throughout the process of adapting guidelines. Using an iterative process, the CBOs provided insight from the SCD community and collaborated with other SCD experts to refine the guidelines to be more patient-centered. In Bates et al. (2020), a study of a collaboration to improve preventive care for pediatric SCD patients, community organizations such as the Sickle Cell Disease Association of America – Michigan Chapter were participants in a series of multistakeholder meetings that brought together diverse perspectives to identify barriers to care and solutions to those barriers. CBOs were also involved in collaborative networks as part of the SCD Treatment Demonstration Program (SCDTDP). They worked alongside academic medical centers, state Medicaid offices, Medicaid Managed Care Organizations (MCOs), and FQHCs to improve SCD health care quality in their region and assess population-level improvements over a period of three years (Faro et al., 2020). Because they are familiar with and trusted by local SCD communities, CBOs’ experiences and perspectives should be incorporated into all stages of the SCD research process and SCD quality improvement projects.

Linkage to Care and Resources

Because of their familiarity and closeness with the communities they serve, and the challenges individuals in those communities face, CBOs can also act as a bridge between individuals with SCD and health care, community support, and other relevant resources.

In an examination of the characteristics of individuals with SCD who are unaffiliated with an SCD treatment center, Mendez et al. (2024) emphasized that community-based approaches, including recruitment through CBO-based outreach, are a key strategy to reach unaffiliated patients, address their barriers to SCD specialty care, and connect them with specialty care. When a social determinants of health (SDoH) screening intervention was implemented within a pediatric hematology clinic, patients with unmet SDoH needs were connected by providers with relevant CBOs (Power-Hays et al., 2020). In a New York City Health + Hospitals initiative to address pediatric SCD quality of care, forming partnerships with CBOs to create a support network for patients’ individual needs was identified as one of the primary objectives to reduce SCD health care disparities (Albert et al., 2024). In a study (Lawrence et al., 2018) exploring perspectives on “community” of individuals with SCD in rural Georgia, participants identified CBOs such as churches as key parts of their geographic communities and pointed to the importance of local social networks of support. The authors of the study emphasized that health care providers should collaborate with these patient-defined communities to ensure that patients’ care and support needs are met comprehensively. The authors of a Medicaid claims data study examining children with sickle cell anemia (SCA) and their use of recommended therapies similarly emphasized that CBOs should partner with clinics, patients, and their families to address barriers to care (Schieve et al., 2019). Collaboration between providers and CBOs can help ensure that patients are aware of the medical options available to them and are connected to the support they need outside the clinical setting.

Working with CHWs

CBOs further strengthen health care delivery to SCD patients by employing, training, or supervising community health workers (CHWs) who support patients with care coordination, education, patient navigation, and more.

A summary of CHWs’ roles in supporting SCD patients showed that many of them came to the intervention affiliated with CBOs, and that they were an effective component of engaging patients in sustainable comprehensive SCD care (Hsu et al., 2016). In a collaboration between a pharmaceutical company and a patient organization to better understand patient preferences and needs in early drug development, CBO-affiliated CHWs performed outreach and screening for SCD patients and caregivers to inform the research process (Jalowsky, 2023). In the development of a training model for community health ambassadors (CHAs) to engage individuals with SCD in patient-centered outcomes research, the Sickle Cell Foundation of Tennessee, a CBO, recruited and trained CHAs and facilitated outreach and communication between researchers and the SCD community (Mayo-Gamble et al., 2020). Through this collaboration, CHAs were able to communicate patients’ self-management challenges and preferences for engagement to the researchers. By leveraging the expertise and cultural competence of CHWs, CBOs can help improve access to care and resources and integrate patient perspectives into SCD research and care delivery.

Formal Partnerships

In addition to CBOs collaborating with scientists and providers on research and care linkage, the literature emphasized that more formal partnerships between CBOs and health care organizations can be a crucial way to build care capacity.

In an examination of policy approaches to improve quality of care and reduce inequities in SCD care, Rivlin et al. (2024) recommended, based on the End Sepsis Initiative as a model, that hospital systems support CBOs that work on SCD. This support could include funding, program development assistance, and integrating CBOs into hospital-based SCD programs. The authors hypothesized that such a partnership would improve access to counseling, outreach programs, and educational resources for SCD patients and their families.

High Total Costs

SCD is associated with a significant financial burden both throughout a patient’s life and on the U.S. healthcare system.

Johnson et al. (2022) estimated the lifetime total SCD-related medical costs in nonelderly privately insured patients at $1.7 million, with patients incurring $44,000 in out-of-pocket SCD-related costs. This study also suggested that SCD-related costs peak early in life during adolescence and young adulthood (Johnson et al., 2022). Annually, SCD costs the U.S. healthcare system an estimated $1.1 billion (Lanzkron et al., 2024; Richardson et al., 2024).

Increased Costs with Complications

SCD-related complications, such as end-organ damage and vaso-occlusive crises, contribute to substantially higher costs for patients, with a large proportion of costs coming from inpatient care and hospital readmissions.

A study by Campbell et al. (2020) estimated that health care costs for SCD patients with end-organ damage, such as stroke, end-stage renal disease, and pulmonary hypertension, are two to five times higher than for patients without end-organ damage. Similarly, patients with recurrent vaso-occlusive crises appear to have very high annual and lifetime costs, estimated respectively at $67,282 and $3.8 million (Richardson et al., 2024). For patients with recurrent vaso-occlusive crises, inpatient costs are the primary driver of their medical expenses (Shah et al., 2020; Udenze, 2023). Several studies (Kumar et al., 2020; Manwani et al., 2022) have emphasized the high-cost resource utilization associated with complications and hospital readmissions. In a study of patients with two or more SCD-related medical visits from 2014-2019, total follow-up health care costs were $3,417 per patient each month (Manwani et al., 2022). In a study analyzing 30-day hospital readmissions after SCD-related crises, Kumar et al. (2020) determined that the 30-day readmission rate was 26%, which resulted in an additional 95,445 days of hospitalization and $152 million cost of hospitalization and $609 million total hospitalization charges in the study cohort of 68,108. The high costs stemming from SCD-related complications suggest the need to manage costs through better strategies for preventing crises and end-organ damage.

Pain Management Strategies

Some studies have shown that improving strategies related to SCD pain management can reduce hospital admission rates and lengths of stays, thus decreasing health care costs.

In Wachnik et al. (2022), the implementation of a standardized and multimodal emergency department pain order set for SCD patients reduced hospital admission rates by 13% and decreased length of stay from 3.65 hospital days to 3.02, resulting in a potential cost reduction of $193,440, or $792 per admission in a patient cohort of 141. Welch-Coltrane et al. (2021) examined how individualized care plans could improve pain management and reduce health resource utilization for adults with SCD. They found that this reduced hospital stays from 5.23 to 3.96 days and caused a 34% decrease in seven-day readmission rates and a 23.7% decrease in 30-day readmission rates. This translated to a potential cost saving of over $1.3 million in the patient cohort of 23.

Cost-Effectiveness of Interventions

Certain interventions, while often initially expensive, have been shown to be cost-effective for SCD patients and the healthcare system in the long-term.

In a study of the health care utilization of patients receiving allogeneic hematopoietic cell transplantation (alloHCT), the data showed that while the median total cost per patient during the alloHCT year was quite high ($413,000 inpatient and $18,000 outpatient), the median total costs per patient went from $42,050 inpatient and $21,176 outpatient in the pre-alloHCT period to $5,170 inpatient and $12,738 outpatient post-alloHCT (Arnold et al., 2015). Similarly, a study of the impact of regular transfusions for children with prior silent cerebral infarcts showed 50% lower hospitalization costs than children receiving the standard care and showed a cost savings of $22,025 for every infarct recurrence prevented (Hsu et al., 2021). A study by Saraf et al. (2020) showed a mean reduction in $20,833 per patient in annual health care costs for SCD patients who underwent hematopoietic stem cell transplantation. These studies showed a potentially significant reduction in health care resource utilization and costs for individuals with SCD who received these therapies.

Gene Therapy

Gene therapy for SCD is another intervention with very high initial costs, but potentially transformative effects for patients.

Studies estimated that each individual treatment would likely be priced at roughly $2 million per patient (Richardson et al., 2024; Winn et al., 2023). This would create substantial budgetary impacts, with one study estimating a one-year budget impact of $29.96 million per state Medicaid program in the states with the highest SCD prevalence (DeMartino et al., 2021). Phares et al. (2024) predicted that the 10-year list price spend for gene therapies (including but not exclusively those targeted for SCD) could reach $35 to $40 billion, which smaller payers may find financially impossible to accommodate without modifications in pricing or payment methods. Quach et al. (2022) advised careful budgetary planning and evaluation of these treatments’ value to ensure patient access. Grady et al. (2021) highlighted that since many individuals with SCD will have Medicaid coverage at some point, it is imperative that Medicaid examine its coverage status and options for gene therapies. These studies emphasized the need for policy reforms and affordability measures to be put in place to make gene therapies accessible to patients.

Database	Search String	URL	Results
PubMed	Concept: sickle cell disease AND health disparities Full string: ("sickle cell"[Title/Abstract] AND ("health disparities"[Title/Abstract] OR "racial disparities"[Title/Abstract] OR "ethnic disparities"[Title/Abstract] OR "racial ethnic disparities"[Title/Abstract] OR "health inequities"[Title/Abstract] OR "health disparities"[Title/Abstract] OR "social determinants"[Title/Abstract])) AND ((ffrft[Filter]) AND (fft[Filter]) AND (2015:2024[pdat]))	link	64
PubMed	Concept: sickle cell disease AND health outcomes Full string: ("sickle cell"[Title/Abstract] AND ("health outcomes"[Title/Abstract] OR "health care outcomes"[Title/Abstract] OR "healthcare outcomes"[Title/Abstract] OR "improved outcomes"[Title/Abstract])) AND ((ffrft[Filter]) AND (fft[Filter]) AND (2015:2024[pdat]))	link	124
PubMed	Concept: sickle cell disease AND pediatric-to-adult care transition Full string: ("sickle cell"[Title/Abstract] AND ("care transition"[Title/Abstract] OR "pediatric to adult"[Title/Abstract] OR "transition clinic"[Title/Abstract] OR "transition clinics"[Title/Abstract] OR "care transfer"[Title/Abstract] OR "transfer of care"[Title/Abstract])) AND ((ffrft[Filter]) AND (fft[Filter]) AND (2015:2024[pdat]))	link	32
PubMed	Concept: sickle cell disease AND community-based organization and health care provider collaboration Full string: ("sickle cell"[Title/Abstract] AND ("collaboration"[Title/Abstract] OR "collaborative"[Title/Abstract] OR "community based"[Title/Abstract] OR "community services"[Title/Abstract] OR "community partner*"[Title/Abstract] OR "patient engagement"[Title/Abstract] OR "community engagement"[Title/Abstract] OR "advocacy"[Title/Abstract])) AND ((ffrft[Filter]) AND (fft[Filter]) AND (2015:2024[pdat]))	link	190
PubMed	Concept: sickle cell disease AND cost of care Full string: ("sickle cell"[Title/Abstract] AND ("cost"[Title/Abstract] OR "costs"[Title/Abstract] OR "financ*"[Title/Abstract] OR "economic burden"[Title/Abstract]) AND ((ffrft[Filter]) AND (fft[Filter]) AND (2015:2024[pdat]))	link	380
OMH Knowledge Center	Concept: sickle cell disease AND health disparities Full string: Subject.Term = '"sickle cell"' AND Subject.Term = '"health disparities" OR "social determinants"' AND textYear >= '2015'	link	13
OMH Knowledge Center	Concept: sickle cell disease AND health outcomes Full string: aggBasic = 'outcomes' AND Subject.Term = '"sickle cell"' AND textYear >= '2015'	link	9
OMH Knowledge Center	Concept: sickle cell disease AND pediatric-to-adult care transition Full string: aggBasic = 'pediatric* OR transition* OR transfer*' AND Subject.Term = '"sickle cell"' AND textYear >= '2015'	link	28
OMH Knowledge Center	Concept: sickle cell disease AND community-based organization and health care provider collaboration Full string: Subject.Term = '"sickle cell"' AND Subject.Term = '"community engagement" OR "advocacy" OR cbpr' AND textYear >= '2015'	link	5
OMH Knowledge Center	Concept: sickle cell disease AND cost of care Full string: Subject.Term = '"sickle cell"' AND Subject.Term = 'costs OR financ* OR economics' AND textYear >= '2015'	link	1

Abel, R. A., Cho, E., Chadwick-Mansker, K. R., D’Souza, N., Housten, A. J., & King, A. A. (2015). Transition needs of adolescents with sickle cell disease. American Journal of Occupational Therapy, 69(2), 6902350030p1–6902350030p5. https://pmc.ncbi.nlm.nih.gov/articles/PMC4480057/

Summary: A study of adolescents with SCD identified the need for educational interventions to enhance transition to adult health care and independent living skills.
Insight on Successful Transition Models: The study’s findings highlighted the need for educational and life skills training to improve transition skills in adolescents, particularly in health care, money management, vocational skills, and education.

Annesi, T., Steinway, C., Oluwole, T., Shilly, S., Szalda, D., Myers, R., Chen, J., & Jan, S. (2023). Quality of web-based sickle cell disease resources for health care transition: Website content analysis. JMIR Pediatrics and Parenting, 6, Article e48924. https://pmc.ncbi.nlm.nih.gov/articles/PMC10750976/

Summary: This study aimed to assess the quality and clarity of online health information on SCD, with a focus on its relevance to the transition to adulthood for individuals with the condition.
Insight on Successful Transition Models: The overall quality of web-based resources on SCD care transitions is inadequate (the information is written at a high level of comprehension). Improving online health information about SCD care transitions could benefit youth by offering clearer expectations, essential knowledge, practical skills, and tools to enhance independence.

Bemrich-Stolz, C. J., Halanych, J. H., Howard, T. H., Hilliard, L. M., & Lebensburger, J. D. (2015). Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease. International Journal of Hematology & Therapy, 1(1), 1–6. https://pmc.ncbi.nlm.nih.gov/articles/PMC4756764/

Summary: This qualitative study aimed to identify transition-related factors that may impact the health of adults with SCD.
Insight on Successful Transition Models: The interviews conducted in this study found that overall young adults felt unprepared transitioning into the adult healthcare system. Recommendations to improve transition programs include reviewing medical history, selecting an adult care provider, developing strategies to navigate the adult healthcare and insurance systems, and fostering self-efficacy.

Calhoun, C., Luo, L., Baumann, A. A., Bauer, A., Shen, E., McKay, V., Hooley, C., James, A., & King, A. A. (2022). Transition for adolescents and young adults with sickle cell disease in a US Midwest urban center: A multilevel perspective on barriers, facilitators, and future directions. Journal of Pediatric Hematology/Oncology, 44(5), e872–e880. https://pmc.ncbi.nlm.nih.gov/articles/PMC9218344/

Summary: This qualitative study, utilizing the American Academy of Pediatrics’ transition guideline, examined the factors that are associated with successful adolescent/young adult-SCD transition programs.
Insight on Successful Transition Models: This study identified several barriers and facilitators in transition programs that need to be addressed, such as health care access, health care delivery and use, disease education and management, and social or emotional considerations.

Clayton-Jones, D., Matthie, N., Treadwell, M., Field, J. J., Mager, A., Sawdy, R., George Dalmida, S., Leonard, C., Koch, K. L., & Haglund, K. (2021). Social and psychological factors associated with health care transition for young adults living with sickle cell disease. Journal of Transcultural Nursing, 32(1), 21–29. https://doi.org/10.1177/1043659619896837

Summary: This qualitative descriptive study aimed to explore factors related to health care transition experiences for young adults with SCD, particularly in light of the rising mortality rates among this population.
Insight on Successful Transition Models: The study found that social factors and self-management experiences influence health care transitions. Eight themes were identified, such as “need for accessible support,” “early assistance with goal setting,” and “spiritual distress.”

Crosby, L. E., Hood, A., Kidwell, K., Nwankwo, C., Peugh, J., Strong, H., Quinn, C., & Britto, M. T. (2020). Improving self-management in adolescents with sickle cell disease. Pediatric Blood & Cancer, 67(10), Article e28492. https://pmc.ncbi.nlm.nih.gov/articles/PMC7722105/

Summary: This study aimed to evaluate a technology-enhanced self-management intervention (SCThrive) for adolescents and young adults with SCD, focusing on the behavioral activation domains of disease knowledge, self-efficacy, motivation, and self-management skills.
Insight on Successful Transition Models: The results of this study highlighted the potential of a self-management intervention to enhance confidence in adolescents and young adults with SCD. Behavioral activation (BA) skills (the knowledge, confidence, and motivation to manage one’s health) are integral in self-efficacy of adults/young adults with SCD.

Crosby, L. E., Quinn, C. T., & Kalinyak, K. A. (2015). A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care. Advances in Therapy, 32(4), 293–305. https://pmc.ncbi.nlm.nih.gov/articles/PMC4415939/

Summary: This review outlined the challenges and concerns faced by patients with SCD during the transition from pediatric to adult health care.
Insight on Successful Transition Models: This review recommended a multidisciplinary, collaborative approach (biological, psychosocial, and sociological) from specialists in multiple disciplines in the successful transition of young adults with SCD out of pediatric care.

Frost, J. R., Cherry, R. K., Oyeku, S. O., Faro, E. Z., Crosby, L. E., Britto, M., Tuchman, L. K., Horn, I. B., Homer, C. J., & Jain, A. (2016). Improving sickle cell transitions of care through health information technology. American Journal of Preventive Medicine, 51(1 Suppl 1), S17-23. https://doi.org/10.1016/j.amepre.2016.02.004

Summary: This study aimed to identify health information needs in order to guide the development of HIT-enabled tools that support care transitions for patients with SCD. Such tools would allow health information to be shared accurately and timely between providers, especially during care transitions such as pediatric to adult care.
Insight on Successful Transition Models: Data from an environmental scan, focus groups, and key informant interviews were integrated to identify gaps and opportunities for developing a Health Information Technology (HIT)-enabled tool to enhance care transitions for patients with SCD.

Howell, K. E., Heitzer, A. M., Longoria, J. N., Potter, B., Wang, W. C., Anderson, S., Kang, G., Hankins, J. S., & Porter, J. S. (2022). Assessment of transition readiness to predict health care utilization during transition to adult care in sickle cell disease. Expert Review of Hematology, 15(12), 1063–1072. https://pmc.ncbi.nlm.nih.gov/articles/PMC9809157/

Summary: The main objective of this study was to assess the effectiveness of the Self-Management Skills Checklist (SMSC) in order to predict successful care transitions from pediatric to adult care for youth with SCD, as well as retention in adult care.
Insight on Successful Transition Models: Results from the study emphasized the importance of monitoring adolescents’ self-management skills, their knowledge of SCD, and executive functioning before they transition out of pediatric care.

Howell, K. E., Kayle, M., Smeltzer, M. P., Nolan, V. G., Mathias, J. G., Nelson, M., Anderson, S., Porter, J. S., Shah, N., & Hankins, J. S. (2024). Gaps during pediatric to adult care transfer escalate acute resource utilization in sickle cell disease. Blood Advances, 8(14), 3679–3685. https://pmc.ncbi.nlm.nih.gov/articles/PMC11284702/

Summary: This study examined the impact of gaps in care as young adults with SCD transfer from pediatric to adult care.
Insight on Successful Transition Models: This study found that longer delays in establishing adult health care after pediatric care for patients with SCD are linked to increased acute health care utilization and fewer maintenance visits.

Howell, K. E., Pugh, N., Longoria, J., Shah, N., Kutlar, A., Gordeuk, V. R., King, A. A., Glassberg, J., Kayle, M., Melvin, C., Treadwell, M., Hankins, J. S., & Porter, J. S. (2023). Burden of aging: Health outcomes among adolescents and young adults with sickle cell disease. HemaSphere, 7(8), Article e930. https://pmc.ncbi.nlm.nih.gov/articles/PMC10348722/

Summary: This study, part of the Sickle Cell Disease Implementation Consortium (SCID), examined the differences in health-related outcomes and transition barriers in adolescents and young adults with SCD as they grow older.
Insight on Successful Transition Models: Adolescents and young adults with SCD face increased severity of the disease and greater mental challenges as they age. This study offered evidence to guide future guideline planning, research efforts, and health service planning. It also emphasized the importance of mental health services, especially during the transition period.

Howell, K. E., Saulsberry-Abate, A. C., Mathias, J. G., Porter, J. S., Hodges, J. R., Ataga, K. I., Anderson, S., Nolan, V., & Hankins, J. S. (2021). Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease. Pediatric Blood & Cancer, 68(10), Article e29209. https://pmc.ncbi.nlm.nih.gov/articles/PMC9084595/

Summary: This study examined the hypothesis that young adults with SCD who participate in a collaborative care model (pediatric providers working with adult care providers) remain in adult care longer than those young adults who only received pediatric transition services.
Insight on Successful Transition Models: Continuity of care reduced acute health care utilization and mortality during the transition from pediatric to adult care. Telemedicine could be an easy way for multiple providers to be involved in patient care.

Kanter, J., Bhor, M., Li, X., Li, F. Y., & Paulose, J. (2019). High health care utilization in adolescents with sickle cell disease prior to transition to adult care: A retrospective study. Journal of Health Economics and Outcomes Research, 6(3), 174–184. https://pmc.ncbi.nlm.nih.gov/articles/PMC7299476/

Summary: This study examined adolescents’ needs as they transition to SCD adult care.
Insight on Successful Transition Models: This study highlighted the importance of specialist care during the transition from pediatric to adult care for patients with SCD for a continuation of treatment and a reduction in health care utilization. This study noted that many young adult patients relied heavily on hydroxyurea and blood transfusions, therefore need to be under the care of a specialist such as a hematologist.

Mathias, J. G., Nolan, V. G., Klesges, L. M., Badawy, S. M., Cooper, W. O., Hankins, J. S., & Smeltzer, M. P. (2021). Hydroxyurea use after transitions of care among young adults with sickle cell disease and Tennessee medicaid insurance. JAMA Network Open, 4(10), Article e2128971. https://pmc.ncbi.nlm.nih.gov/articles/PMC8515209/

Summary: This cohort study examined the changes of hydroxyurea use in young adults with SCD transitioning to adult care. Hydroxyurea can diminish SCD complications.
Insight on Successful Transition Models: This study found that hydroxyurea use diminished as SCD patients transitioned to adult care, possibly due to changes in insurance status and eligibility requirements. Access to specialized care, transitioning program development, and prescription support for care providers could improve hydroxyurea use in young adults.

Mulchan, S. S., Valenzuela, J. M., Crosby, L. E., & Diaz Pow Sang, C. (2016). Applicability of the SMART model of transition readiness for sickle-cell disease. Journal of Pediatric Psychology, 41(5), 543–554. https://pmc.ncbi.nlm.nih.gov/articles/PMC4888114/

Summary: This study examined the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) model for adolescents and young adults (AYA) with sickle-cell disease (SCD).
Insight on Successful Transition Models: This study found that the SMART model for transition readiness is a useful tool for patients with SCD, but it should be tailored for patients with SCD. Discrimination, racial stereotyping, and stigma attached to SCD should be taken into consideration as well as patients’ knowledge of pain management.

Nolan, V. G., Anderson, S. M., Smeltzer, M. P., Porter, J. S., Carroll, Y. M., Brooks, I. M., Elmagboul, N., Gurney, J. G., & Hankins, J. S. (2018). Pediatric to adult care co-location transitional model for youth with sickle cell disease. American Journal of Hematology, 93(1), E30–E32. https://doi.org/10.1002/ajh.24953

Summary: This study examined a care model (co-location model) that overlaps pediatric and adult care for adolescents with SCD.
Insight on Successful Transition Models: Findings from the co-location model showed that patients who participated had fewer acute health episodes, and there was an increase in scheduled outpatient appointments.

Porter, J. S., Lopez, A. D., Wesley, K. M., Magdovitz-Frankfurt, P., Anderson, S. M., Cole, A. R., Boggs, J., & Hankins, J. S. (2017). Using qualitative perspectives of adolescents with sickle cell disease and caregivers to develop healthcare transition programming. Clinical Practice in Pediatric Psychology, 5(4), 319–329. https://pmc.ncbi.nlm.nih.gov/articles/PMC6532654/

Summary: The purpose of this study was to evaluate current transition programs (supporting adolescents and young adults from pediatric to adult care), as well as to recognize unmet health needs with patients and caregivers in order to improve such transition programs.
Insight on Successful Transition Models: The findings of this study emphasized the importance of conducting periodic readiness assessments, offering skill-building opportunities tailored to readiness levels, and fostering social support networks to promote and facilitate learning. Patient and caregiver feedback is essential to assessing and modifying transition programs.

Porter, J. S., Wesley, K. M., Zhao, M. S., Rupff, R. J., & Hankins, J. S. (2017). Pediatric to adult care transition: Perspectives of young adults with sickle cell disease. Journal of Pediatric Psychology, 42(9), 1016–1027. https://pmc.ncbi.nlm.nih.gov/articles/PMC6251560/

Summary: This study aimed to examine the perspectives on transition and transition readiness among young adult patients with SCD who have moved from pediatric to adult health care.
Insight on Successful Transition Models: Young adults provided their opinions about their care and their transition from pediatric to adult health care. Some issues that were the most important to young adults with SCD were “choosing an adult provider, seeking emergency care, understanding medications/medication adherence, knowing SCD complications, and being aware of the impact of health behaviors.”

Saulsberry, A. C., Porter, J. S., & Hankins, J. S. (2019). A program of transition to adult care for sickle cell disease. Hematology: American Society of Hematology Education Program, 2019(1), 496–504. https://pmc.ncbi.nlm.nih.gov/articles/PMC6913425/

Summary: This review examined and compared different transition models as well as ways that these programs measure effectiveness.
Insight on Successful Transition Models: The review recommended standardization of health care transition outcome measures in order to effectively compare different transition programs. Patient input, as well as the three phases of transition (preparation, transfer, and adult care integration), should be compared.

Saulsberry-Abate, A. C., Partanen, M., Porter, J. S., Podila, P. S. B., Hodges, J. R., King, A. A., Wang, W. C., Schreiber, J. E., Zhao, X., Kang, G., Jacola, L. M., & Hankins, J. S. (2021). Cognitive performance as a predictor of healthcare transition in sickle cell disease. British Journal of Haematology, 192(6), 1082–1091. https://pmc.ncbi.nlm.nih.gov/articles/PMC8092972/

Summary: This study examined the relationship between neurocognitive functioning and socio-environmental factors in relation to health care transition outcomes.
Insight on Successful Transition Models: This study emphasized the potential value of incorporating neurocognitive screening into transition programs. It also stressed the importance of ongoing research of disease-modifying therapies in order to preserve cognitive function.

Smith, W. R., Sisler, I. Y., Johnson, S., Lipato, T. J., Newlin, J. S., Owens, Z. S., Morgan, A. M., Treadwell, M. J., & Polak, K. (2019). Lessons learned from building a pediatric-to-adult sickle cell transition program. Southern Medical Journal, 112(3), 190–197. https://pmc.ncbi.nlm.nih.gov/articles/PMC6590675/

Summary: This report aimed to evaluate the development and implementation of a program for children and adolescents with SCD to transition to adult health care.
Insight on Successful Transition Models: Six core elements were identified as essential to a successful transition model: establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring to adult care, and integrating into an adult practice.

Sobota, A. E., Umeh, E., & Mack, J. W. (2015). Young adult perspectives on a successful transition from pediatric to adult care in sickle cell disease. Journal of Hematology Research, 2(1), 17–24. https://pmc.ncbi.nlm.nih.gov/articles/PMC4862600/

Summary: Young adults with SCD who have already transitioned out of pediatric care participated in focus groups to share their insights and experiences in transitioning from pediatric to adult care. They also shared their opinions on what a successful transition program would look like.
Insight on Successful Transition Models: Findings from the study’s focus groups can be used when developing or modifying transition programs. Young adults’ experiences and opinions can be invaluable when considering transition models.

Stollon, N. B., Paine, C. W., Lucas, M. S., Brumley, L. D., Poole, E. S., Peyton, T., Grant, A. W., Jan, S., Trachtenberg, S., Zander, M., Bonafide, C. P., & Schwartz, L. A. (2015). Transitioning adolescents and young adults with sickle cell disease from pediatric to adult health care: Provider perspectives. Journal of Pediatric Hematology/Oncology, 37(8), 577–583. https://pmc.ncbi.nlm.nih.gov/articles/PMC4806545/

Summary: This study used SCD providers’ perspectives on successful transitioning for patients from pediatric to adult health care.
Insight on Successful Transition Models: Results from the SCD provider interviews indicated that transition success was evaluated based on health care utilization, quality of life, and the patient’s disease staying at the same level of severity or improving.

Viola, A. S., Drachtman, R., Kaveney, A., Sridharan, A., Savage, B., Delnevo, C. D., Coups, E. J., Porter, J. S., & Devine, K. A. (2021). Feasibility of medical student mentors to improve transition in sickle cell disease. Journal of Pediatric Psychology, 46(6), 650–661. https://pmc.ncbi.nlm.nih.gov/articles/PMC8291672/

Summary: This nonrandomized study examined the feasibility, acceptability, and preliminary outcomes of an innovative medical student mentor intervention aimed at improving transition outcomes for adolescents and/or young adults with SCD.
Insight on Successful Transition Models: Results from this study suggested involving medical students in a “near-peer” mentor program as part of a transition model is both feasible and acceptable.

Wu, J. K., McVay, K., Mahoney, K. M., Sayani, F. A., Roe, A. H., & Cebert, M. (2024). Experiences with healthcare navigation and bias among adult women with sickle cell disease: A qualitative study. Quality of Life Research, 33(12), 3459–3467. https://pmc.ncbi.nlm.nih.gov/articles/PMC11599335/

Summary: This study used interviews with adult women with SCD to gain insight into their experiences living with SCD as well as their encounters with the health care system. It also touched on the transition time of these women from pediatric to adult care.
Insight on Successful Transition Models: The themes identified in this study emphasized the three phases of the care transition process: future orientation, preparation, and the transition itself. Health literacy on SCD, patient support, and positive relationships between physicians and patients are especially important during the transition period.

Albert, M. S., Alphonso, C., Patel, U., Balaoura, K., DeLuna, N., Mack, J., Castano, F., Muhyedeen, S., Bernstein, B., Poulard, J.-B., & Rivlin, K. (2024). Providing the tools to facilitate quality care for children with sickle cell disease. Journal of Health Care for the Poor and Underserved, 35(3S), 143–150. https://muse.jhu.edu/pub/1/article/933288

Summary: An initiative in New York City Health + Hospitals used Project ECHO to form a learning collaborative and address SCD quality of care.
Insight on CBO/Provider Collaboration: Integration of CHWs into the SCD care team can facilitate relationships with CBOs. CBOs can help providers form a comprehensive network of patient support, including social support and other services for patients. Members of CBOs formed part of the clinical advisory group and learning collaborative.

Alberts, N. M., Badawy, S. M., Hodges, J., Estepp, J. H., Nwosu, C., Khan, H., Smeltzer, M. P., Homayouni, R., Norell, S., Klesges, L., Porter, J. S., & Hankins, J. S. (2020). Development of the InCharge Health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: User-centered design approach. JMIR mHealth and uHealth, 8(5), Article e14884. https://pmc.ncbi.nlm.nih.gov/articles/PMC7245000/

Summary: This study designed an mHealth intervention for individuals with SCD to improve hydroxyurea adherence, incorporating a user-centered design and the Health Belief Model.
Insight on CBO/Provider Collaboration: CBOs that support SCD patients in Memphis, TN were involved in the recruiting of participants and in the phase 1 optimization digital innovation workshop for the app design (along with SCD patients and health care providers). This approach ensured that the app design was relevant to the needs of the local SCD community.

Badawy, S. M. (2021). Clinical trial considerations in sickle cell disease: Patient-reported outcomes, data elements, and the stakeholder engagement framework. Hematology: American Society of Hematology Education Program, 2021(1), 196–205. https://pmc.ncbi.nlm.nih.gov/articles/PMC8791158/

Summary: This review looked at considerations for SCD clinical trials, emphasizing the importance of patient-centered research and stakeholder engagement.
Insight on CBO/Provider Collaboration: The article emphasized the importance of stakeholder engagement, including the involvement of SCD community organizations at all stages of the research process, in order to ensure that research priorities align with the needs of the community.

Bates, K. E., Davis, C. S., Reeves, S. L., & Freed, G. L. (2020). Designing a multistakeholder collaboration to improve preventive care for children with sickle cell anemia. Journal of Pediatric Hematology/Oncology, 42(3), e152–e158. https://pmc.ncbi.nlm.nih.gov/articles/PMC7935462/

Summary: This study identified potential interventions to improve preventive care for children with sickle cell anemia (SCA) by convening multi-stakeholder design meetings.
Insight on CBO/Provider Collaboration: The study involved community organizations, such as the Sickle Cell Disease Association of America – Michigan Chapter, in its multi-stakeholder meetings that brought together diverse perspectives to identify barriers to care and identify solutions.

Cronin, R. M., Mayo-Gamble, T. L., Stimpson, S.-J., Badawy, S. M., Crosby, L. E., Byrd, J., Volanakis, E. J., Kassim, A. A., Raphael, J. L., Murry, V. M., & DeBaun, M. R. (2018). Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers. BMC Hematology, 18, Article 12. https://pmc.ncbi.nlm.nih.gov/articles/PMC5994026/

Summary: This study adapted existing medical guidelines for SCD to be more patient-centered.
Insight on CBO/Provider Collaboration: This study emphasized community engagement at all stages of the process of adapting medical guidelines. This included the participation and feedback of community-based organizations, health care providers, people with SCD, and their caregivers.

Faro, E. Z., Shook, L., Treadwell, M. J., King, A. A., Whiteman, L. N., Ivy, E. D., Hulihan, M., Kavanagh, P. L., Selk, S., Oyeku, S., & Berns, S. D. (2020). A national measurement framework to assess and improve sickle cell care in 4 US regions. Public Health Reports, 135(4), 442–451. https://pmc.ncbi.nlm.nih.gov/articles/PMC7383758/

Summary: This study used a multilevel measurement strategy to assess improvements in quality of care and health care access for individuals with SCD in 4 U.S. regions using state Medicaid data.
Insight on CBO/Provider Collaboration: The study mentioned the involvement of CBOs (along with academic medical centers, state Medicaid offices, Medicaid MCOs, and federally qualified health centers) as part of the 4 regional collaborative networks that shared the goals of increasing the number of providers caring for SCD patients, increasing the number of providers prescribing hydroxyurea, and increasing the number of patients under the care of providers who are knowledgeable about SCD.

Housten, A. J., Abel, R. A., Lindsey, T., & King, A. A. (2016). Feasibility of a community-based sickle cell trait testing and counseling program. Journal of Health Disparities Research and Practice, 9(3), Article 1. https://pmc.ncbi.nlm.nih.gov/articles/PMC5070660/

Summary: This is a feasibility assessment of a community-based intervention to educate individuals about sickle cell trait (SCT) and offer SCT testing.
Insight on CBO/Provider Collaboration: The researchers collaborated with CBOs and community programs such as health centers, churches, a public library, and a minority scientist showcase to recruit, educate, and test participants. These were included to reach more of the target population for the study.

Hsu, L. L., Green, N. S., Donnell Ivy, E., Neunert, C. E., Smaldone, A., Johnson, S., Castillo, S., Castillo, A., Thompson, T., Hampton, K., Strouse, J. J., Stewart, R., Hughes, T., Banks, S., Smith-Whitley, K., King, A., Brown, M., Ohene-Frempong, K., Smith, W. R., & Martin, M. (2016). Community health workers as support for sickle cell care. American Journal of Preventive Medicine, 51(1 Suppl 1), S87-98. https://pmc.ncbi.nlm.nih.gov/articles/PMC4918511/

Summary: This review explored of CHWs as a potential support to improve health care outcomes for individuals with SCD by addressing cultural barriers, social support needs, health education, and other patient needs.
Insight on CBO/Provider Collaboration: The review emphasized that CBOs have a role in training and supervising CHWs. CBOs and CHWs can help patients with SCD self-management through mentoring programs and peer groups.

Jalowsky, M., Hauber, B., Scott, M. J., Arkin, S., Coulter, J. R., Watt, S. J., Kelly, L. M. G., & Valentine, A. (2023). Priority outcomes in sickle cell disease treatment: Co-creation and implementation of a preference exercise with patients and caregivers to inform drug development. Journal of Patient Experience, 10, Article 23743735231213767. https://pmc.ncbi.nlm.nih.gov/articles/PMC10652801/

Summary: This study used a collaborative program between a pharmaceutical company and a patient organization to understand the priorities of patients with SCD and their caregivers in order to incorporate these perspectives into early drug development.
Insight on CBO/Provider Collaboration: The patient organization used a network of CBOs to reach diverse patient populations. The CBOs received training to recruit patients, and helped communicate directly with patients to address fear, mistrust, and other concerns about their participation.

Lawrence, R. H., Apenteng, B. A., Schueths, A. M., Pattanaik, S., & Gibson, R. W. (2018). Defining “community” from the perspectives of individuals with sickle cell disease in rural Georgia. Journal of Health Care for the Poor and Underserved, 29(4), 1438–1454. https://www.researchgate.net/profile/April-Schueths-2/publication/263456705_Online_teaching_communities_within_sociology_a_counter_trend_to_the_marketization_of_higher_education/links/5c7318b5a6fdcc47159903e0/Online-teaching-communities-within-sociology-a-counter-trend-to-the-marketization-of-higher-education.pdf

Summary: This study explored the perspectives of individuals with SCD in rural Georgia on “community.”
Insight on CBO/Provider Collaboration: Individuals identified CBOs, such as churches, as key parts of their geographic community, and pointed to the importance of local social networks of support. The authors of the study emphasized that health care providers should collaborate with these patient-defined communities to ensure more comprehensive care delivery.

Lee, L. H., Whisenton, L. H., Benger, J., & Lanzkron, S. (2021). A community-centered approach to sickle cell disease and clinical trial participation: An evaluation of perceptions, facilitators, and barriers. Blood Advances, 5(23), 5323–5331. https://pmc.ncbi.nlm.nih.gov/articles/PMC9153049/

Summary: This study explored the perspectives and experiences of individuals with SCD (and their caregivers) regarding clinical research and treatment needs.
Insight on CBO/Provider Collaboration: CBOs assisted with recruiting participants and disseminating information about the workshops. Using CBOs to conduct outreach helped the study reach a more diverse population.

Mayo-Gamble, T. L., Murry, V. M., Cunningham-Erves, J., Cronin, R. M., Lari, N., Gorden, A., Scott, L., DeBaun, M. R., & Thompson, T. (2020). Engaging individuals with sickle cell disease in patient-centered outcomes research: A community health ambassador training model. Journal of Health Care for the Poor and Underserved, 31(1), 353–369. https://www.researchgate.net/publication/339137611_Engaging_Individuals_with_Sickle_Cell_Disease_in_Patient-Centered_Outcomes_Research_A_Community_Health_Ambassador_Training_Model

Summary: This paper described the development of a training model for community health ambassadors (CHAs) to engage individuals with SCD in patient-centered outcomes research.
Insight on CBO/Provider Collaboration: The researchers collaborated with the Sickle Cell Foundation of Tennessee, which recruited CHAs and helped facilitate communication between researchers and the SCD community.

Mendez, G. G., Nocek, J. M., Brambilla, D. J., Jacobs, S., Cole, O., Kanter, J., Glassberg, J., Saving, K. L., Melvin, C. L., Gibson, R. W., Treadwell, M., Jackson, G. L., King, A. A., Gordeuk, V. R., Kroner, B., Hsu, L. L., & Sickle Cell Disease Implementation Consortium. (2024). Social determinants of health and treatment center affiliation: Analysis from the sickle cell disease implementation consortium registry. BMC Health Services Research, 24(1), Article 291. https://pmc.ncbi.nlm.nih.gov/articles/PMC10916176/

Summary: This study examined the social determinants of health of SCD patients who are unaffiliated, or lack regular contact with an SCD specialist.
Insight on CBO/Provider Collaboration: Researchers emphasized that community-based approaches, including engagement through CBOs, are a possible way to reach unaffiliated patients with SCD.

Minkovitz, C. S., Grason, H., Ruderman, M., & Casella, J. F. (2016). Newborn screening programs and sickle cell disease: A public health services and systems approach. American Journal of Preventive Medicine, 51(1 Suppl 1), S39-47. https://pmc.ncbi.nlm.nih.gov/articles/PMC4916337/

Summary: This study examined newborn screening programs (NBS) for SCD across the U.S. and the robustness of public health services and systems across the various programs.
Insight on CBO/Provider Collaboration: The researchers noted collaboration between NBS programs and CBOs on functions such as community outreach and workforce development.

Power-Hays, A., Li, S., Mensah, A., & Sobota, A. (2020). Universal screening for social determinants of health in pediatric sickle cell disease: A quality-improvement initiative. Pediatric Blood & Cancer, 67(1), Article e28006. https://pmc.ncbi.nlm.nih.gov/articles/PMC6868301/

Summary: This quality-improvement initiative involved a universal social determinants of health screening program within a pediatric hematology clinic serving children with SCD.
Insight on CBO/Provider Collaboration: The screening intervention involved connecting patients with SDoH needs to relevant community organizations that could provide assistance.

Rivlin, K., Poulard, J.-B., & Stein-Albert, M. (2024). Eliminating health care access and quality inequities in sickle cell disease: Policy lessons from the End Sepsis Initiative. Journal of Health Care for the Poor and Underserved, 35(3S), 118–122. https://muse.jhu.edu/pub/1/article/933285

Summary: This paper examined policy approaches to improve quality of care and reduce inequities in SCD, using the End Sepsis Initiative as a model.
Insight on CBO/Provider Collaboration: The article recommended that hospital systems support CBOs that work on SCD, providing funding, assisting with program development, and integrating CBOs into hospital-based SCD programs. This would improve access to counseling, outreach programs, and educational resources for families with SCD.

Schieve, L. A., Simmons, G. M., Payne, A. B., Abe, K., Hsu, L. L., Hulihan, M., Pope, S., Rhie, S., Dupervil, B., & Hooper, W. C. (2022). Vital signs: Use of recommended health care measures to prevent selected complications of sickle cell anemia in children and adolescents—Selected U.S. States, 2019. MMWR: Morbidity and Mortality Weekly Report, 71(39), 1241–1246. https://pmc.ncbi.nlm.nih.gov/articles/PMC9533731/

Summary: This study looked at Medicaid claims data of children and adolescents with SCA and their use of recommended therapies such as transcranial Doppler and hydroxyurea.
Insight on CBO/Provider Collaboration: The authors recommended that CBOs should be involved in health care quality improvement initiatives to address barriers to care for individuals with SCD.

Treadwell, M., Du, L., Lawrence, Y., Gaspar, M., Hassell, K., Shah, S., Akpan, M., Crook, N., Taylor, M., Gopal, S., & Pacific Sickle Cell Regional Collaborative. (2024). Tracking telehealth needs for individuals with sickle cell disease through the COVID-19 pandemic: Across-sectional survey study. Health Scientific Reports, 7(11), Article e70163. https://pmc.ncbi.nlm.nih.gov/articles/PMC11538030/

Summary: This study evaluated telehealth needs and experiences of individuals with SCD throughout the COVID-19 pandemic.
Insight on CBO/Provider Collaboration: The researchers collaborated with CBOs and CHWs in the Pacific Sickle Cell Regional Collaborative (PSCRC). CBOs contacted clients with SCD to conduct the survey via telephone. CBOs also employed the CHWs who worked with patients and families to address their telehealth needs.

Adam, S. S., Flahiff, C. M., Kamble, S., Telen, M. J., Reed, S. D., & De Castro, L. M. (2017). Depression, quality of life, and medical resource utilization in sickle cell disease. Blood Advances, 1(23), 1983–1992. https://pmc.ncbi.nlm.nih.gov/articles/PMC5728280/

Summary: This study aimed to assess the prevalence of depression in adult SCD patients and its relationship with Health-Related Quality of Life (HRQoL) and medical resource utilization.
Insight on SCD Costs and Economic Burden: Total health care costs for adult SCD patients with depression were significantly higher than those for SCD patients without depression.

Arnold, S. D., Jin, Z., Sands, S., Bhatia, M., Kung, A. L., & Satwani, P. (2015). Allogeneic hematopoietic cell transplantation for children with sickle cell disease is beneficial and cost-effective: A single-center analysis. Biology of Blood and Marrow Transplantation, 21(7), 1258–1265. https://pmc.ncbi.nlm.nih.gov/articles/PMC5605133/

Summary: This study examined health care utilization and allogeneic hematopoietic cell transplantation (alloHCT) costs for children with SCD.
Insight on SCD Costs and Economic Burden: The study found that despite the high initial cost of alloHCT, the long-term costs were lower (due to lower health care utilization) and it is a cost-effective treatment for children with SCD.

Baldwin, Z., Jiao, B., Basu, A., Roth, J., Bender, M. A., Elsisi, Z., Johnson, K. M., Cousin, E., Ramsey, S. D., & Devine, B. (2022). Medical and non-medical costs of sickle cell disease and treatments from a US perspective: A systematic review and landscape analysis. PharmacoEconomics - Open, 6(4), 469–481. https://pmc.ncbi.nlm.nih.gov/articles/PMC9283624/

Summary: This systematic review examined existing literature of medical and non-medical costs for individuals with SCD.
Insight on SCD Costs and Economic Burden: Findings from this review revealed that more studies need to be completed to get a full picture of health care costs over an individual’s lifetime.

Campbell, A., Cong, Z., Agodoa, I., Song, X., Martinez, D. J., Black, D., Lew, C. R., Varker, H., Chan, C., & Lanzkron, S. (2020). The economic burden of end-organ damage among Medicaid patients with sickle cell disease in the United States: A population-based longitudinal claims study. Journal of Managed Care & Specialty Pharmacy, 26(9), 1121–1129. https://pmc.ncbi.nlm.nih.gov/articles/PMC10391152/

Summary: The purpose of this study was to evaluate the impact of end-organ damage (EOD) on health care resource utilization (HRU), direct costs, and productivity loss among Medicaid patients with SCD.
Insight on SCD Costs and Economic Burden: End-organ damage (EOD) (i.e., stroke, renal dysfunction, cardiopulmonary conditions, etc.) caused substantial economic burden. SCD management strategies that reduce the risk of EOD could have the potential to provide significant clinical and economic benefits to patients and society.

Combs, J. C., Dougherty, M., Yamasaki, M. U., DeCherney, A. H., Devine, K. M., Hill, M. J., Rothwell, E., O’Brien, J. E., & Nelson, R. E. (2023). Preimplantation genetic testing for sickle cell disease: A cost-effectiveness analysis. F&S Reports, 4(3), 300–307. https://pmc.ncbi.nlm.nih.gov/articles/PMC10504548/

Summary: This study compared the costs of standard of care treatment for a naturally conceived, sickle cell disease (SCD)-affected individual and the conception of a non-sickle cell disease (non-SCD) individual (in vitro fertilization with preimplantation genetic testing for monogenic disease (IVF + PGT-M)).
Insight on SCD Costs and Economic Burden: Although there were many social and emotional factors to take into consideration in this study, screening for SCD carrier status and access to IVF + PGT-M for individuals looking to conceive could be cost-effective.

DeMartino, P., Haag, M. B., Hersh, A. R., Caughey, A. B., & Roth, J. A. (2021). A budget impact analysis of gene therapy for sickle cell disease: The Medicaid perspective. JAMA Pediatrics, 175(6), 617–623. https://pmc.ncbi.nlm.nih.gov/articles/PMC7985816/

Summary: This study aimed to evaluate the budget impact of a gene therapy for severe sickle cell disease. The impact of an annuity payment model was also assessed.
Insight on SCD Costs and Economic Burden: Early clinical trial data suggested that gene therapy may significantly enhance the quality of life for patients with severe SCD. However, gene therapy could produce a substantial financial impact, and changes must occur to make it more affordable.

Gehrie, E. A., Ness, P. M., Bloch, E. M., Kacker, S., & Tobian, A. A. R. (2017). Medical and economic implications of strategies to prevent alloimmunization in sickle cell disease. Transfusion, 57(9), 2267–2276. https://pmc.ncbi.nlm.nih.gov/articles/PMC5695925/

Summary: This review analyzed current medical literature on alloimmunization risks in individuals with SCD, with a focus on the financial costs of prevention measures.
Insight on SCD Costs and Economic Burden: Findings from the review showed that currently there is no affordable alloimmunization prevention option. There needs to be more research identifying individuals at highest risk for alloimmunization, as well the most effective screening measures.

Goshua, G., Calhoun, C., Ito, S., James, L. P., Luviano, A., Krishnamurti, L., & Pandya, A. (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. https://pmc.ncbi.nlm.nih.gov/articles/PMC10370480/

Summary: The aim of this study was to evaluate gene therapy compared to standard of care (SOC) in patients with SCD using cost-effectiveness analysis (CEA) and distributional CEA.
Insight on SCD Costs and Economic Burden: This study found that gene therapy did not meet conventional CEA standards, but it met distributional CEA standards due to consideration of health inequities.

Grady, A., Fiori, A., Patel, D., & Nysenbaum, J. (2021). Profile of Medicaid enrollees with sickle cell disease: A high need, high cost population. PLoS One, 16(10), Article e0257796. https://pmc.ncbi.nlm.nih.gov/articles/PMC8550393/

Summary: This study examined the characteristics of sickle cell disease in Medicaid recipients in four states.
Insight on SCD Costs and Economic Burden: Many individuals with SCD will receive Medicaid coverage at some point in their lives. The authors noted that there is evidence that gene therapies could be beneficial for individuals with SCD, and it is
imperative that Medicaid examine its coverage status of such therapies.

Herring, W. L., Gallagher, M. E., Shah, N., Morse, K. C., Mladsi, D., Dong, O. M., Chawla, A., Leiding, J. W., Zhang, L., Paramore, C., & Andemariam, B. (2024). Cost-effectiveness of lovotibeglogene autotemcel (lovo-Cel) gene therapy for patients with sickle cell disease and recurrent Vaso-occlusive events in the United States. PharmacoEconomics, 42(6), 693–714. https://pmc.ncbi.nlm.nih.gov/articles/PMC11126463/

Summary: This study compared the gene therapy lovo-cel with common care practices for individuals with SCD, specifically for cost-effectiveness.
Insight on SCD Costs and Economic Burden: The findings of this study indicated that lovo-cel gene therapy could significantly enhance the lifetime health and economic trajectories of patients with SCD experiencing recurrent vaso-occlusive events (VOEs).

Hsu, P., Gay, J. C., Lin, C. J., Rodeghier, M., DeBaun, M. R., & Cronin, R. M. (2021). Economic evaluation of regular transfusions for cerebral infarct recurrence in the Silent Cerebral Infarct Transfusion Trial. Blood Advances, 5(23), 5032–5040. https://pmc.ncbi.nlm.nih.gov/articles/PMC9153054/

Summary: This study compared the health care costs of regular blood transfusions and standard care using SIT (Silent Cerebral Infarct Transfusion) Trial participants with SCD.
Insight on SCD Costs and Economic Burden: Regular transfusion therapy for children with prior silent brain bleeds dramatically reduced hospitalization costs by 50% compared to standard care. This preventative strategy was highly cost-effective, with a cost of $22,025 per brain bleed avoided.

Jiao, B., Basu, A., Ramsey, S., Roth, J., Bender, M. A., Quach, D., & Devine, B. (2022). Health state utilities for sickle cell disease: A catalog prepared from a systematic review. Value in Health, 25(2), 276–287. https://pmc.ncbi.nlm.nih.gov/articles/PMC8804335/

Summary: This systematic review sought to advance the field of SCD research by developing a comprehensive catalog of health state utility values, identifying critical knowledge gaps, and providing a roadmap for future preference elicitation studies.
Insight on SCD Costs and Economic Burden: This study offered a resource for future cost-effectiveness analyses in SCD by providing a detailed catalogue of health state utilities for the disease, its complications, and its treatments.

Johnson, K. M., Jiao, B., Ramsey, S. D., Bender, M. A., Devine, B., & Basu, A. (2023). Lifetime medical costs attributable to sickle cell disease among nonelderly individuals with commercial insurance. Blood Advances, 7(3), 365–374. https://pmc.ncbi.nlm.nih.gov/articles/PMC9898623/

Summary: This study examined total health care costs and out-of-pocket costs for individuals with SCD who are commercially insured in the first 64 years of life.
Insight on SCD Costs and Economic Burden: Study results revealed a substantial economic burden of SCD, peaking early in life, highlighting the urgent need for curative and innovative treatments.

Kumar, V., Chaudhary, N., & Achebe, M. M. (2020). Epidemiology and Predictors of all-cause 30-Day readmission in patients with sickle cell crisis. Scientific Reports, 10(1), Article 2082. https://pmc.ncbi.nlm.nih.gov/articles/PMC7005718/

Summary: This study analyzed readmission (within 30 days) costs and factors associated with readmission after hospitalization from a sickle cell crisis.
Insight on SCD Costs and Economic Burden: Results from the study found that readmission within a month after hospitalization was common and was a huge financial burden on the healthcare system.

Lanzkron, S., Crook, N., Wu, J., Hussain, S., Curtis, R. G., Robertson, D., Baker, J. R., Nugent, D., Soni, A., Roberts, J. C., Ullman, M. M., Kanter, J., & Nichol, M. B. (2024). Costs and impact of disease in adults with sickle cell disease: A pilot study. Blood Advances, 8(14), 3629–3638. https://pmc.ncbi.nlm.nih.gov/articles/PMC11279258/

Summary: This article researched many facets of SCD including the direct and indirect costs and financial burden this disease has on the healthcare system.
Insight on SCD Costs and Economic Burden: This study revealed that SCD correlates to high economic burden, with the majority of the costs from transfusions and outpatient care. This data could help to design or modify health policy interventions that could reduce health care costs while improving HRQoL.

Manwani, D., Burnett, A. L., Paulose, J., Yen, G. P., Burton, T., Anderson, A., Wang, S., Lee, S., & Saraf, S. L. (2022). Treatment patterns and burden of complications associated with sickle cell disease: A US retrospective claims analysis. EJHaem, 3(4), 1135–1144. https://pmc.ncbi.nlm.nih.gov/articles/PMC9713207/

Summary: This retrospective study examined health care costs associated with SCD (complications, treatments, and health care resource utilization).
Insight on SCD Costs and Economic Burden: SCD patients across all age groups experienced a high rate of complications, HCRUs, and therefore high health care costs. This study recommended exploring underused treatment options that could reduce SCD progression.

Mupfudze, T. G., Preussler, J. M., Sees, J. A., SanCartier, M., Arnold, S. D., & Devine, S. (2021). A qualitative analysis of state Medicaid coverage benefits for allogeneic hematopoietic cell transplantation (alloHCT) for patients with sickle cell disease (SCD). Transplantation and Cellular Therapy, 27(4), 345–351. https://doi.org/10.1016/j.jtct.2021.01.022

Summary: This study aimed to assess state Medicaid coverage for alloHCT in SCD patients and bone marrow transplant financial coordinators’ experiences with these programs.
Insight on SCD Costs and Economic Burden: Results from this study found that financial coordinators stated that the Medicaid eligibility requirements (for their state) were restrictive and that reimbursement rates were low (which can affect the quality of care of SCD patients).

Phares, S., Trusheim, M., Emond, S. K., & Pearson, S. D. (2024). Managing the challenges of paying for gene therapy: Strategies for market action and policy reform in the United States. Journal of Comparative Effectiveness Research, 13(12), Article e240118. https://pmc.ncbi.nlm.nih.gov/articles/PMC11609966/

Summary: This study looked at the challenges and strategies for paying for gene therapies in the U.S.
Insight on SCD Costs and Economic Burden: While gene therapies are potentially transformative for people living with diseases such as SCD, the 10-year list price spend for gene therapies expected to receive approval by 2032 could reach $35 to $40 billion, creating budgetary and access challenges.

Quach, D., Jiao, B., Basu, A., Bender, M. A., Hankins, J., Ramsey, S., & Devine, B. (2022). A landscape analysis and discussion of value of gene therapies for sickle cell disease. Expert Review of Pharmacoeconomics & Outcomes Research, 22(6), 891–911. https://pmc.ncbi.nlm.nih.gov/articles/PMC10783332/

Summary: This is a review of ongoing clinical trials for gene therapy as a potential cure for SCD.
Insight on SCD Costs and Economic Burden: While the upfront costs of gene therapy are high and present a challenge for payers, their potential curative benefits for patients are also very high. The authors advised careful evaluation of these treatments’ value and budgetary planning to ensure patient access.

Reeves, S. L., Ng, S., Dombkowski, K. J., Raphael, J. L., & Chua, K.-P. (2023). TCD screening and spending among children with sickle cell anemia. American Journal of Managed Care, 29(3), e79–e84. https://pmc.ncbi.nlm.nih.gov/articles/PMC10838405/

Summary: This study examined transcranial Doppler screening among privately insured children with SCA and the associated out-of-pocket costs.
Insight on SCD Costs and Economic Burden: In 27% of screens, out-of-pocket spending exceeded $100.

Richardson, T., Rice, M., Haumschild, R., Hoffer, D., Morana, S., & Watkins, J. (2024). Optimizing the management of inherited blood disorders in a changing market: Findings from the AMCP Market Insights Program. Journal of Managed Care & Specialty Pharmacy, 30(7-a Suppl), S1–S12. https://pmc.ncbi.nlm.nih.gov/articles/PMC11219340/

Summary: This study assessed the economic impacts and strategies for managing inherited blood disorders within the U.S. healthcare system.
Insight on SCD Costs and Economic Burden: The annual cost of care for SCD in the United States is estimated to be $1.1 billion, most of which is paid for by public programs. Individuals with SCD, particularly those with recurrent vaso-occlusive crises (VOCs), have very high annual and lifetime health care costs (for patients with recurrent VOCs, $67,282 and $3.8 million, respectively). While gene therapies are promising, the high upfront investments of $2 million per patient create a challenge for payers.

Saraf, S. L., Ghimire, K., Patel, P., Sweiss, K., Gowhari, M., Molokie, R. E., Gordeuk, V. R., & Rondelli, D. (2020). Improved health care utilization and costs in transplanted versus non-transplanted adults with sickle cell disease. PLoS One, 15(2), Article e0229710. https://pmc.ncbi.nlm.nih.gov/articles/PMC7043749/

Summary: This study compared the health care costs of adults with SCD who underwent hematopoietic stem cell transplantation with those who did not.
Insight on SCD Costs and Economic Burden: In the second year post-transplantation, hematopoietic stem cell transplantation led to a mean reduction in $20,833 per patient in annual health care costs compared to pre-transplantation costs.

Shah, N., Bhor, M., Xie, L., Halloway, R., Arcona, S., Paulose, J., & Yuce, H. (2019). Treatment patterns and economic burden of sickle-cell disease patients prescribed hydroxyurea: A retrospective claims-based study. Health and Quality of Life Outcomes, 17(1), Article 155. https://pmc.ncbi.nlm.nih.gov/articles/PMC6794855/

Summary: This study examined hydroxyurea treatment patterns and the economic burden of SCD among Medicaid enrollees.
Insight on SCD Costs and Economic Burden: The mean annual SCD-related costs per patients with SCD were $27,779, with inpatient costs accounting for the majority ($20,128). The study found that high costs may be attributable to hydroxyurea discontinuation or low adherence.

Shah, N., Bhor, M., Xie, L., Paulose, J., & Yuce, H. (2020). Medical resource use and costs of treating sickle cell-related Vaso-occlusive crisis episodes: A retrospective claims study. Journal of Health Economics and Outcomes Research, 7(1), 52–60. https://pmc.ncbi.nlm.nih.gov/articles/PMC7343342/

Summary: This study evaluated the economic burden of vaso-occlusive crises in adult Medicaid patients with SCD using claims data.
Insight on SCD Costs and Economic Burden: Patients with vaso-occlusive crises, particularly 3 or more per year, had significantly higher health care costs than patients with fewer vaso-occlusive crises. Of these patients with more VOCs, the VOC inpatient costs accounted for a substantial percentage of their health care costs, indicating that interventions to reduce the frequency of VOCs would reduce the economic burden on the healthcare system.

Shah, N. R., Bhor, M., Latremouille-Viau, D., Kumar Sharma, V., Puckrein, G. A., Gagnon-Sanschagrin, P., Khare, A., Kumar Singh, M., Serra, E., Davidson, M., Xu, L., & Guerin, A. (2020). Vaso-occlusive crises and costs of sickle cell disease in patients with commercial, Medicaid, and Medicare insurance—The perspective of private and public payers. Journal of Medical Economics, 23(11), 1345–1355. https://doi.org/10.1080/13696998.2020.1813144

Summary: This study used private and public payer data to analyze costs of vaso-occlusive crises among commercially, Medicaid-, and Medicare-insured patients with SCD.
Insight on SCD Costs and Economic Burden: The study’s findings showed that vaso-occlusive crises, particularly 2 or more, significantly raised health care costs across all payer types. Inpatient costs appeared to be the primary driver of the cost discrepancy.

Skinner, R., Breck, A., & Esposito, D. (2022). An impact evaluation of two modes of care for sickle cell disease crises. Journal of Comparative Effectiveness Research, 11(6), 399–409. https://doi.org/10.2217/cer-2021-0257

Summary: This study used a Markov model to estimate the potential cost savings and hospital length of stay impact of increased access to specialty infusion centers for SCD patients experiencing vaso-occlusive crises.
Insight on SCD Costs and Economic Burden: Expanding access to specialty care to SCD patients undergoing crises could reduce medical costs by $1.9 billion over 10 years and result in 55,000 fewer hospitalizations over that time period.

Speller, J., Rayel, S., Hayashi, K., Kirby, M., Munevar, D., Hartzman, A., & Dietz, K. (2024). The highest-cost Medicaid enrollees with sickle cell disease had annual health care expenditures nearing $200 000. Health Affairs Scholar, 2(4), Article qxae029. https://pmc.ncbi.nlm.nih.gov/articles/PMC11034526/

Summary: This study examined Medicaid claims data on health care expenditures among enrollees with SCD.
Insight on SCD Costs and Economic Burden: Medicare enrollees with SCD had high health care costs, with the average annual cost being $22,600, or more than double the average Medicaid enrollee. Those with the most severe SCD (in the clinical trial-eligible cohort) incurred nearly $200,000 in annual costs.

Thi Nhat Ho, A., Shmelev, A., Joshi, A., & Ho, N. (2019). Trends in hospitalizations for sickle cell disease related-complications in USA 2004—2012. Journal of Hematology, 8(1), 11–16. https://pmc.ncbi.nlm.nih.gov/articles/PMC7153675/

Summary: This study examined hospitalization trends in SCD in the U.S. from 2004 to 2023.
Insight on SCD Costs and Economic Burden: While hospital length of stay decreased throughout the study period (from 7.1 ± 7.65 days in 2004 to 6.23 ± 6.42 days in 2012), median hospital costs increased from $15,350 per admission in 2004 to $24,780 per admission in 2012.

Udeze, C., Evans, K. A., Yang, Y., Lillehaugen, T., Manjelievskaia, J., Mujumdar, U., Li, N., & Andemariam, B. (2023). Economic and clinical burden of managing sickle cell disease with recurrent Vaso-occlusive crises in the United States. Advances in Therapy, 40(8), 3543–3558. https://pmc.ncbi.nlm.nih.gov/articles/PMC10329958/

Summary: This study assessed the economic and clinical burden of SCD in patients with recurrent vaso-occlusive crises using a U.S. claims database.
Insight on SCD Costs and Economic Burden: Patients with recurrent vaso-occlusive crises incurred higher annual ($67,282 vs. $4134) and lifetime ($3.8 million vs. $229,000) health care costs compared to controls. Inpatient stays were the primary driver of these costs.

Vekeman, F., Sasane, M., Cheng, W. Y., Ramanakumar, A. V., Fortier, J., Qiu, Y., Duh, M. S., Paley, C., & Adams-Graves, P. (2016). Adherence to iron chelation therapy and associated healthcare resource utilization and costs in Medicaid patients with sickle cell disease and thalassemia. Journal of Medical Economics, 19(3), 292–303. https://doi.org/10.3111/13696998.2015.1117979

Summary: This study used Medicaid claims data to investigate the impact of iron chelation therapy adherence on health care utilization and costs in individuals with SCD and thalassemia.
Insight on SCD Costs and Economic Burden: The data showed that adherent patients had lower inpatient and ER visits. While adherent patients had more outpatient visits, these were outweighed by the reduced inpatient and ER costs.

Wachnik, A. A., Welch-Coltrane, J. L., Adams, M. C. B., Blumstein, H. A., Pariyadath, M., Robinson, S. G., Saha, A., Summers, E. C., & Hurley, R. W. (2022). A standardized emergency department order set decreases admission rates and in-patient length of stay for adults patients with sickle cell disease. Pain Medicine, 23(12), 2050–2060. https://pmc.ncbi.nlm.nih.gov/articles/PMC9714532/

Summary: This study evaluated a standardized emergency department (ED) pain management order set for improving pain management and reducing hospital admissions for adults with SCD.
Insight on SCD Costs and Economic Burden: The ED order set reduced hospital admission rates by 13% and decreased length of stay from 3.65 hospital days to 3.02. This resulted in a potential cost reduction of $193,440, or $792 per admission.

Welch-Coltrane, J. L., Wachnik, A. A., Adams, M. C. B., Avants, C. R., Blumstein, H. A., Brooks, A. K., Farland, A. M., Johnson, J. B., Pariyadath, M., Summers, E. C., & Hurley, R. W. (2021). Implementation of individualized pain care plans decreases length of stay and hospital admission rates for high utilizing adults with sickle cell disease. Pain Medicine, 22(8), 1743–1752. https://pmc.ncbi.nlm.nih.gov/articles/PMC8346918/

Summary: This study investigated individualized care plans (ICPs) in improving pain management and reducing health resources utilization for adults with SCD.
Insight on SCD Costs and Economic Burden: Implementing ICPs reduced hospital stays from 5.23 to 3.96 days and caused a 34% decrease in 7-day readmission rates and 23.7% decrease in 30-day readmission rates. This translated to a potential cost saving of over $1.3 million in the patient cohort.

Winn, A., Basu, A., & Ramsey, S. D. (2023). A framework for a health economic evaluation model for patients with sickle cell disease to estimate the value of new treatments in the United States of America. PharmacoEconomics - Open, 7(2), 313–320. https://pmc.ncbi.nlm.nih.gov/articles/PMC10043085/

Summary: This paper presented a model called HISCORE (Hutchinson Institute Sickle Cell Disease Outcomes Research and Economics), developed to understand the costs of SCD and evaluate the impact of novel therapies on costs and disease outcomes.
Insight on SCD Costs and Economic Burden: SCD incurs high health care costs, particularly inpatient care. While potentially revolutionary, the costs of gene therapies are expected to cost nearly $2 million per treatment.

Abel, R. A., Cho, E., Chadwick-Mansker, K. R., D’Souza, N., Housten, A. J., & King, A. A. (2015). Transition needs of adolescents with sickle cell disease. American Journal of Occupational Therapy, 69(2), 6902350030p1–6902350030p5. https://pmc.ncbi.nlm.nih.gov/articles/PMC4480057/

Adam, S. S., Flahiff, C. M., Kamble, S., Telen, M. J., Reed, S. D., & De Castro, L. M. (2017). Depression, quality of life, and medical resource utilization in sickle cell disease. Blood Advances, 1(23), 1983–1992. https://pmc.ncbi.nlm.nih.gov/articles/PMC5728280/

Albert, M. S., Alphonso, C., Patel, U., Balaoura, K., DeLuna, N., Mack, J., Castano, F., Muhyedeen, S., Bernstein, B., Poulard, J.-B., & Rivlin, K. (2024). Providing the tools to facilitate quality care for children with sickle cell disease. Journal of Health Care for the Poor and Underserved, 35(3S), 143–150. https://muse.jhu.edu/pub/1/article/933288

Alberts, N. M., Badawy, S. M., Hodges, J., Estepp, J. H., Nwosu, C., Khan, H., Smeltzer, M. P., Homayouni, R., Norell, S., Klesges, L., Porter, J. S., & Hankins, J. S. (2020). Development of the InCharge Health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: User-centered design approach. JMIR mHealth and uHealth, 8(5), Article e14884. https://pmc.ncbi.nlm.nih.gov/articles/PMC7245000/

Annesi, T., Steinway, C., Oluwole, T., Shilly, S., Szalda, D., Myers, R., Chen, J., & Jan, S. (2023). Quality of web-based sickle cell disease resources for health care transition: Website content analysis. JMIR Pediatrics and Parenting, 6, Article e48924. https://pmc.ncbi.nlm.nih.gov/articles/PMC10750976/