Abstract
Background:
Advances in sickle cell disease (SCD) care have substantially improved survival. This resulted in a growing population of adult women for whom cancer prevention is increasingly relevant. Female-specific cancer prevention strategies, including human papillomavirus (HPV) vaccination, cervical cancer screening, and breast cancer screening, are well-established in the general population. However, their implementation among women with SCD remains poorly characterized.
Methods:
We conducted a scoping review of PubMed and Embase from inception through January 2026 to identify studies, evaluating HPV vaccination, cervical cancer screening, or breast cancer screening among individuals with SCD. Observational and interventional studies reporting screening uptake, vaccination rates, or cervical HPV prevalence were included. Data were synthesized descriptively given the limited and heterogeneous nature of available evidence.
Results:
Eight studies met inclusion criteria. Across studies the uptake of HPV vaccination and cancer screening was variable but consistently suboptimal relative to the general population. HPV vaccination completion rates among adolescents and young adults with SCD did not exceed 50% in most cohorts, although targeted system-level interventions were associated with meaningful improvements. Data on cervical cancer screening were extremely limited, with only one study reporting high-risk HPV prevalence among adult women with SCD. Evidence on breast cancer screening was similarly sparse. The adherence to recommended screening intervals was inconsistent, and a high prevalence of dense breast tissue was reported. Overall, findings highlight fragmented delivery of preventive oncology services and substantial gaps in evidence, particularly in adult populations and high-income settings.
Conclusions:
Women with SCD experience significant gaps in HPV vaccination and cancer screening, despite increasing survival and frequent health care contact. The scarcity of high-quality data limits understanding of screening adherence, disparities, and downstream outcomes. Integrating preventive oncology into SCD care and prioritizing population-based research are essential to address missed opportunities and ensure equitable cancer prevention for this growing population.
Keywords
Introduction
Sickle cell disease (SCD) is a chronic, multisystem disorder characterized by hemolysis, vasculopathy, and progressive end organ injury. Over the past several decades, major advances in newborn screening, infection prophylaxis, hydroxyurea therapy, and access to comprehensive specialty care have substantially improved life expectancy for individuals with SCD.1–3 As a result, a growing number of patients now survive into middle and older adulthood. With increasing survival, age-related comorbidities, including cardiovascular disease, chronic kidney disease, and malignancy, have become increasingly relevant contributors to long-term morbidity and mortality in this population.4–6
Despite this demographic transition, engagement in preventive health services among individuals with SCD remains inconsistent. Studies in pediatric populations demonstrate suboptimal adherence to established preventive care measures, including immunizations, routine health maintenance, and guideline-recommended surveillance such as transcranial Doppler screening. 7 Even in the general U.S. adult population, adherence to recommended cancer screening for cervical, breast, and colorectal cancer falls below national targets. 8 For adults with SCD, these gaps may be further amplified by fragmented care delivery across emergency departments, primary care, and hematology subspecialty clinics. Limited continuity of primary care, high acute care utilization, and prior negative health care experiences may all contribute to reduced uptake of recommended preventive services.9,10
Beyond system-level barriers, emerging epidemiologic data suggest that individuals with SCD may experience differences in cancer risk. Increased rates of leukemia, particularly acute myeloid leukemia and myelodysplastic syndromes, have been reported in this population. 11 Potential mechanisms underlying this increased cancer risk include chronic hemolysis-associated marrow stress, inflammation, cumulative transfusion exposure, and iron overload. Rare malignancies such as renal medullary carcinoma, classically associated with sickle cell trait and occasionally reported in SCD, further highlight that cancer risk patterns in hemoglobinopathies remain incompletely defined. Population-based analyses of solid tumors have also suggested possible variation in site-specific malignancy patterns, although these associations remain incompletely characterized. 6 These observations highlight the need for effective and tailored preventive oncology strategies in a population that has historically been medically underserved. Importantly, delayed cancer detection may carry disproportionate consequences in SCD, where baseline anemia, chronic organ dysfunction, and limited tolerance of oncologic therapies may restrict curative options once malignancy is advanced.
The intersection of women’s health and SCD represents a particularly important yet understudied area. Human papillomavirus (HPV) vaccination, cervical cancer screening, and breast cancer screening are cornerstone components of preventive oncology. However, real-world screening and vaccination patterns in women with SCD have not been comprehensively evaluated. To date, no published synthesis has examined the extent to which these services are utilized or the barriers and facilitators influencing cancer screening uptake in this uniquely vulnerable population.
The objective of this review is to summarize the existing evidence on HPV vaccination, cervical cancer screening, and breast cancer screening among individuals with SCD, identify key gaps in the literature, and outline priorities for future research and health system interventions aimed at improving preventive cancer care in this population. To our knowledge, this is the first review to synthesize evidence on female-specific cancer prevention in individuals with SCD.
Methods
A structured literature search was performed in PubMed and Embase to identify studies evaluating HPV vaccination, cervical cancer screening, or breast cancer screening among females with SCD. Both databases were searched from inception through January 2025 using combinations of controlled vocabulary and keyword terms related to “sickle cell disease,” “HPV vaccination,” “cervical cancer screening,” “breast cancer screening,” and “cancer prevention.” No language or geographic restrictions were applied.
All identified records were screened at the title and abstract level, followed by full-text review of potentially eligible studies. We included observational studies, interventional studies, and screening program evaluations that reported uptake, adherence, prevalence, or implementation outcomes related to HPV vaccination, cervical cancer screening, or breast cancer screening in patients with confirmed SCD or sickle cell syndromes. Case reports, editorials, and studies unrelated to cancer-preventive services were excluded.
The initial search yielded 110 records from PubMed and 103 from Embase. After removal of duplicates and application of eligibility criteria, the final dataset consisted of studies reporting screening behaviors, vaccination rates, or cervical HPV prevalence among women or adolescents with SCD, along with the few available studies describing breast cancer screening utilization. Given the paucity of peer-reviewed data, conference abstracts were included to capture emerging evidence and more fully characterize the current literature. Data were extracted on study design, population characteristics, screening or vaccination outcomes, and key barriers or contextual factors. When available, additional study details including clinical setting, study period, and personnel involved in counseling or vaccine delivery were also extracted. This review was conducted as a scoping review to map the existing evidence and identify knowledge gaps rather than to perform quantitative synthesis.
Results
A total of eight studies met inclusion criteria (Table 1). Across studies, uptake of HPV vaccination and cancer screening among individuals with SCD was variable but consistently lower than general population benchmarks.
Summary of Studies Evaluating Female-Specific Cancer Prevention in Individuals with Sickle Cell Disease
Several studies were reported as conference abstracts and are included to reflect emerging evidence in a limited literature base.
SCD, sickle cell disease; HPV, human papillomavirus; AYA, adolescent and young adult.
HPV vaccination and cervical cancer screening
Several studies evaluated HPV vaccination among adolescents and young adults with SCD, collectively demonstrating suboptimal vaccine initiation and completion. In a cohort of 479 adolescents, implementation of a multicomponent intervention, including provider education, incentive structures, and active monitoring, was associated with improved vaccination outcomes, with initiation increasing from 28% to 46% and series completion rising from 7% to 49%. 12 The intervention was implemented in a specialty hematology clinic from October 1, 2018, to December 31, 2019, and involved nurses, nursing coordinators, and clinicians; HPV vaccination was offered during sickle cell clinic visits with chart verification of series completion. In contrast, observational cohorts without targeted interventions reported substantially lower adherence. One retrospective study of children and adolescent and young adult survivors with SCD and childhood cancer found that only 47.1% completed the HPV vaccine series, with subspecialty counseling emerging as an important determinant of vaccination decisions and persistent misperceptions cited as barriers to uptake. 13 In this multimethod study, the retrospective chart review assessed patients seen in subspecialty clinics in 2019, and the qualitative component showed that adolescents and caregivers placed particular weight on recommendations from trusted subspecialty providers. Similarly, another cohort reported that only 37.1% of patients with SCD were up to date on HPV vaccination. 14
Data on cervical cancer screening in adult women with SCD were limited. A cross-sectional screening study conducted in Ghana identified high-risk HPV infection in 28.6% of women with SCD, with cervical lesions detected in 3.6% of participants. No genotype-specific differences were observed, and high-risk HPV positivity was not associated with demographic characteristics. 15 Evidence from high-income settings was sparse. In a study evaluating engagement with national cancer early-detection programs in the United Kingdom, overall participation rates were generally comparable to regional averages. However, breast cancer screening coverage among women with SCD was lower, both in terms of invitations issued and attendance following invitation. 16
Additional findings highlight broader challenges in preventive care delivery. In a retrospective cohort reported from an adult sickle cell access initiative in Los Angeles County, California, one-quarter of adults with SCD had no health care encounters other than emergency or inpatient care in the 12 months preceding their first clinic visit, and all were missing at least one recommended adult immunization, including HPV vaccination. 17 Because this study was reported in abstract form, detailed information regarding the study period and case ascertainment was limited.
Breast cancer screening
Available evidence on breast cancer screening in this population remains limited. In a retrospective single-center cohort of 156 women with SCD, 71% had undergone at least one screening mammogram, but only 56% had been screened within the preceding 2 years. 18 More than half of screened women were found to have dense breast tissue, with higher density scores observed among younger women and those with lower body mass index. Data from another cohort further demonstrated limited screening uptake, with only 42% of eligible women receiving mammography and just 11% of adults over the age of 50 undergoing screening colonoscopy. 19
Collectively, these studies demonstrate substantial gaps in HPV vaccination, cervical cancer screening, and breast cancer screening among individuals with SCD. They reflect inconsistent implementation of established preventive strategies and limited guidance tailored to the unique clinical context of this population.
Discussion
Despite major improvements in survival for individuals with SCD, this review demonstrates that engagement in female-specific cancer prevention, including HPV vaccination, cervical cancer screening, and breast cancer screening, remains limited and highly variable. Although the available evidence is sparse and heterogeneous, several consistent themes emerge that have important implications for preventive oncology in this growing adult population. Importantly, the consequences of delayed cancer detection may be magnified in SCD, where baseline anemia, chronic organ dysfunction, and reduced tolerance of oncologic therapies may limit treatment options once disease is advanced.
Across studies evaluating HPV vaccination, uptake was suboptimal. Even in pediatric and adolescent cohorts where vaccination is most effective and most strongly recommended, completion rates did not exceed 50%. Interventions that included structured provider education, monitoring systems, or clinic-level incentives produced meaningful improvements, which underscores the central role of system-embedded implementation strategies. In contrast, missed vaccination opportunities were common. That was influenced by fragmented care across primary care and subspecialty settings, uncertainty about responsibility for vaccination counseling, and persistent misperceptions among caregivers and adolescents. These challenges mirror those observed in other chronic disease populations but may be amplified in SCD, where acute care utilization often displaces preventive care during routine clinical encounters.
Data on cervical cancer screening among adult women with SCD remain extremely limited. Only a single study reported the prevalence of high-risk HPV infection and cervical lesions, identifying a high burden of high-risk HPV positivity of approximately 29% in a Ghanaian cohort. These findings raise important questions regarding biological susceptibility, sexual health disparities, and access to screening and follow up care. The absence of comparable data from high-income settings represents a critical knowledge gap. Despite frequent health care contact, it remains unclear whether women with SCD in the United States receive guideline-concordant cervical cancer screening or appropriate follow-up after abnormal results.
The literature on breast cancer screening in women with SCD is similarly sparse. Available retrospective analyses suggest that while overall mammography uptake may approach general population levels in some settings, adherence to recommended screening intervals remains suboptimal, with nearly half of eligible women not screened within the preceding 2 years. Importantly, a high prevalence of dense breast tissue was observed, raising the possibility of altered imaging performance and delayed detection. Whether increased breast density reflects chronic anemia, systemic inflammation, or other disease-specific factors remains unknown, and further studies are needed.
Taken together, these findings reveal a pattern in which preventive oncology measures for women with SCD are inconsistently delivered, poorly measured, and insufficiently prioritized. The limited evidence base also precludes meaningful assessment of disparities by race, socioeconomic status, genotype, or care setting, even though women with SCD are disproportionately exposed to structural inequities that have historically impeded access to preventive care.
The evidence gaps identified in this review are substantial. Most available studies are single-center, retrospective, and descriptive, with small sample sizes and inconsistent reporting of demographic and clinical characteristics. HPV vaccination studies have largely focused on pediatric or adolescent populations, limiting generalizability to adult women for whom cervical cancer screening is most relevant. Data from high-income settings on cervical cancer screening are notably lacking, and breast cancer screening studies have relied on observational cohorts without standardized definitions of screening adherence or imaging follow-up. While inclusion of conference abstracts was necessary to capture emerging evidence, this further highlights the preliminary nature of the existing literature.
At the same time, these limitations represent important opportunities for future research and intervention. As women with SCD continue to live longer, cancer prevention will become increasingly relevant to hematologists, primary care clinicians, and public health practitioners. Multilevel interventions modeled on successful vaccination initiatives could be adapted to improve cervical and breast cancer screening through coordinated care pathways integrating hematology and primary care. Population-based linkage studies may help clarify whether cancer incidence and outcomes differ by SCD genotype, transfusion exposure, hydroxyurea use, or inflammatory burden. Health system strategies such as electronic health record prompts, embedded screening referrals, and targeted patient navigation may be particularly effective in a population that already experiences fragmented care.
In summary, cancer prevention for women with SCD is characterized by low vaccination uptake, limited screening data, and substantial missed opportunities. Addressing these gaps will require deliberate integration of preventive health services into SCD care, rigorous epidemiologic studies to define cancer risks and screening performance, and sustained collaboration across hematology, primary care, and gynecologic oncology. As survival continues to improve, ensuring equitable access to preventive oncology services should be viewed as a core component of high-quality care for women with SCD.
Footnotes
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.