Key Findings
- Purpose
To evaluate a citywide, multi-component initiative intended to increase hydroxyurea (HU) use among children with sickle cell disease (SCD), with particular attention to the role of partnerships between community-based organizations (CBOs) and community health workers (CHWs) in providing education, navigation, peer support, and practical assistance. - Population (Model)
Mixed-methods evaluation of an initiative implemented across NYC Health + Hospitals from 2022–2023, using 2019 as the baseline period. The initiative reached more than 300 eligible providers, with 99 actively participating in the incentive program, and impacted approximately 400 pediatric patients with SCD annually. A matched cohort of 730 Medicaid-enrolled pediatric patients was included in the formal evaluation. The patient population ranged from 9 months to 21 years of age. - Headline Result
- The proportion of pediatric patients with at least one HU fill increased from 57.1% at baseline to 79.1% during the intervention period.
- HU adherence, defined as proportion of days covered greater than 80%, increased from 32.5% to 40.0%.
- Patients seen by participating providers had 14% higher HU-fill rates and were 10% more likely to achieve the adherence threshold.
- These findings represent adjusted associations and should not be interpreted as proof that provider participation or the CBO–CHW partnership alone caused the improvements.
- Emergency department utilization was also lower among patients seen by participating providers. After adjustment, these patients had an 8% lower likelihood of an emergency department visit during 2022–2023.
- Qualitative findings identified the CBO–CHW partnership as an important and central component of the broader initiative, particularly for education, navigation, trust-building, and practical support.
- Why It Matters
Hydroxyurea is an evidence-based disease-modifying therapy for SCD, but uptake and adherence remain suboptimal. This evaluation suggests that integrating trusted CBOs and CHWs into clinical care may complement provider education and system-level tools by helping families understand HU, address concerns and misinformation, navigate pharmacies and insurance, coordinate transportation, and maintain engagement with care. The findings are particularly relevant to pediatric SCD programs seeking approaches that extend support beyond the clinical encounter. However, because the initiative combined several components, the independent contribution of the CBO–CHW partnership cannot be isolated.
- Evidence Gaps & Limitations
The intervention was implemented within a single large urban public health system, which may limit generalizability to other settings. Because provider education, electronic health-record tools, financial incentives, and CBO–CHW support were implemented concurrently, the study could not estimate the independent effect of each component. Provider surveys also had modest response rates, potentially introducing selection bias. Further research is needed to determine which components are essential, how the model performs in different healthcare settings, and whether improvements in HU uptake and adherence are sustained over longer periods.
Source: Journal of Sickle Cell Disease- “Community leads the way: the essential role of CBO-anchored community health worker partnerships in strengthening hydroxyurea uptake and sickle cell disease care”
Regulatory & Guideline Watch
The 2014 National Heart, Lung, and Blood Institute (NHLBI) Expert Panel Report recommends offering hydroxyurea to infants aged 9 months and older, children, and adolescents with sickle cell anemia (SCA), including HbSS and HbSβ⁰-thalassemia, regardless of clinical severity, to reduce SCD-related complications. The guideline emphasizes discussion of treatment burden, patient and family preferences, and shared decision-making. The American Society of Hematology (ASH) hydroxyurea guidance distinguishes SCA — HbSS or HbSβ⁰-thalassemia — from other SCD genotypes. For patients with HbSβ⁺-thalassemia or HbSC who have recurrent SCD-associated pain affecting daily activities or quality of life, ASH recommends consultation with a sickle cell expert regarding hydroxyurea rather than applying the SCA recommendation automatically. The current guidance supports the clinical importance of hydroxyurea and shared decision-making but does not establish a specific CBO–CHW model as the recommended method for improving uptake or adherence.