Section on Implementing Evidence-Based Interventions for Sickle Cell Disease (ISCD)
Sickle Cell Disease (SCD), an inherited blood disease characterized by anemia, severe pain and other vasoocclusive complications, and early mortality, is endemic to populations residing in sub-Saharan Africa, yet evidence-based interventions are rarely available, accessible, or widely adopted for disease management.
The mission of the ISCD Section is to understand the who, why, where, and how interventions for SCD management are adopted by certain communities and not others, and ultimately implement sustainable and scalable evidence-based interventions in a context appropriate manner. Because context matters, approaching interventions with cultural sensitivity and innovation for diverse populations in low resource settings, and continuous engagement of key stakeholders is key to improving health and overall health outcomes.
Ongoing Projects:
Implementation trial in Nigeria for SCD management: mAnaging siCkle CELl disEase through incReased AdopTion of hydroxyurEa in Nigeria (ACCELERATE). An implementation trial with an embedded clinical trial using task-shifting to improve the uptake of hydroxyurea (HU) prescription among providers.
Primary outcome: Adoption of HU over a 2-year period.
Qualitative analysis of SCD providers’ and researchers’ perceptions on the adoption of a task-sharing mental health intervention for SCD patients in LMICs.
A commentary exploring the role of implementation science in the uptake and scalability of EBI for SCD management.
Umbrella Review: A review of systematic reviews and meta-analysis to examine quality and reporting of scalability of interventions for the top 3 global burden of CVD (rheumatic heart disease, ischemic heart disease, and stroke).
Scoping review exploring evidence-based, non-pharmacological interventions that address mental health issues for SCD populations globally.
Systematic review exploring music-based, health communication interventions for SCD populations.
Secondary Data Analysis:
SPARCS Project: Analysis of the Sickle Cell Anemia (SCA) crisis data available within the Statewide Planning and Research Cooperative System (SPARCS) in New York State to examine health outcomes regional disparities in sickle cell disease (SCD) hospitalizations across New York State (NYS) from 2009 to 2022. The study examines differences in disease severity, mortality risk, healthcare costs, and hospital resource utilization across various health service areas in NYS.
- All of US: This project examines the relationship between Sickle Cell Disease (SCD), social vulnerability, and health outcomes, including discrimination in medical settings and mortality, using data from the All of Us research program and the Social Vulnerability Index (SVI). By analyzing healthcare experiences and survival patterns, this study aims to highlight health disparities in SCD and the impact of social factors on patient outcomes.
Completed Projects
Barriers and Facilitators of Healthcare Utilization amongst People Living with Sickle Cell Disease in the United States: A Scoping Review (2025) [Manuscript Under Review with PLOS One] Sickle cell disease (SCD) stands as one of the most prevalent genetic disorders in the United States (U.S.) that causes severe consequences such as organ damage and excruciating pain. Alarmingly, recent literature indicates a decline in the number of people living with SCD (PLWSCD) seeking professional care – hinting at an avoidance of the healthcare system. Therefore, this review synthesizes the evidence regarding barriers and facilitators influencing healthcare utilization among PLWSCD within the U.S.
Assessment of musical interventions and its effect on blood pressure among United States populations: a systematic review and meta-analysis (2024). Front Cardiovasc Med. 2024 Oct 15;11:1405455. doi: 10.3389/fcvm.2024.1405455 Hypertension (HTN) currently affects over 120 million Americans, in the United States (US). Thus, the implementation of evidence-based interventions (EBI) for blood pressure (BP) reduction is pivotal in minimizing this burden. This work evaluates evidence from published literature on the effectiveness of musical interventions for BP reduction within the US.
Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007–2018 National Health Interview Survey (NHIS). (2023). https://bmjopen.bmj.com/content/bmjopen/13/2/e069075.full.pdf We used the National Health Interview Survey (NHIS) data set to examine the prevalence of comorbid medical conditions; explore barriers to accessing healthcare and special educational services; and assess the associations between sickle cell disease (SCD) status and demographics/socioeconomic status (SES), and social determinants of health (SDoH) on comorbidities among children in the USA. Data was acquired from the National Health Interview Survey (NHIS) Sample Child Core questionnaire 2007–2018 dataset that included 133,542 children.
Analysis of the 2007–2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States. (2023). Int J Environ Res Public Health. 2023 Jun 15;20(12):6137. doi: 10.3390/ijerph20126137 This study compared neurological complications among a national sample of United States children with or without sickle cell disease (SCD) and evaluated health status, healthcare and special education utilization patterns, barriers to care, and association of SCD status and demographics/socioeconomic status (SES) on comorbidities and healthcare utilization. Data was acquired from the National Health Interview Survey (NHIS) Sample Child Core questionnaire 2007–2018 dataset that included 133,542 children.
Assessing descriptions of scalability for hypertension control interventions implemented in low-and middle-income countries: A systematic review (2022) PLoS One. 2022 Jul 28;17(7):e0272071. doi: 10.1371/journal.pone.0272071 The prevalence of hypertension continues to rise in low- and middle-income- countries (LMICs) where scalable, evidence-based interventions (EBIs) that are designed to reduce morbidity and mortality attributed to hypertension have yet to be fully adopted or disseminated. We sought to evaluate evidence from published randomized controlled trials using EBIs for hypertension control implemented in LMICs, and identify the WHO/ExpandNet scale-up components that are relevant for consideration during “scale-up” implementation planning.
Implementation science research for the scale-up of evidence-based interventions for sickle cell disease in africa: a commentary. Global Health. 2021 Feb 17;17(1):20. DOI: 10.1186/s12992-021-00671-x The burden of sickle cell disease (SCD) is greatest among African nations. Effective scalability of evidence-based interventions (e.g., newborn screening, health education, prophylaxis for infection, optimal nutrition and hydration, hydroxyurea therapy, blood transfusions, and transcranial Doppler (TCD) screening) is urgently needed particularly in these settings for disease management. However, Africa is constrained by limited resources and the lack of capacity to conduct implementation science research for proper understanding of context, and assessment of barriers and facilitators to the uptake and scalability of evidence-based interventions (EBI) for SCD management. We outline implementation science approaches to embed EBI for SCD within the African context and highlight key implementation research programs for SCD management. Building implementation research capacity will meet the major need of developing effective life-long and accessible locally-tailored interventions for patients with SCD in Africa.
Section Leader: Joyce Gyamfi, EdD, MS (gyamfj01@nyu.edu)