# The Nurse Champion Model for Sickle Cell Disease Early Diagnosis and Care Access

> **NIH NIH R21** · UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA · 2021 · $176,144

## Abstract

Abstract
Sickle cell disease (SCD) is a major contributor to child morbidity and mortality. Life expectancy of babies with
SCD varies widely depending on geographic location. In the USA, universal newborn screening (NBS) facilitates
early diagnosis and prompt linkage to care with overall survival rate in SCD children greater than 94%. In Sub-
Saharan Africa (SSA) approximately 90% of the children born annually with SCD will die before their fifth birthday,
often undiagnosed. The absence of early diagnosis through laboratory-based NBS program is a major barrier to
implementation of timely preventive measures in SSA. Emergent, novel, inexpensive, point-of-care tests
(POCTs), with analytic characteristics and field-tested performance comparable to laboratory methods offer
intriguing options for early diagnosis of SCD in primary health centers (PHCs). Our study objective is to use a
type-2 hybrid implementation-effectiveness design to assess and pilot a SCD-POCT model in one urban and
one rural PHC over 6 months in Sierra Leone where our extant SCD health systems strengthening and human
capacity building research program is housed. Our rationale is that early SCD diagnosis in neonates
demonstrably decreases morbidity and mortality rates considerably in the first 5 years of life. In this feasibility
study, the research aims include developing and assisting PHCs in implementing the model; evaluating
processes/determinants of model implementation; and evaluating the model’s effectiveness, acceptability and
effects on provider and client outcomes. Using implementation science frameworks, our research team will
iteratively engage key stakeholders to inform the development of the PHC-based SCD-POCT model. The
evidence-informed nurse champion platform will frame the implementation model and will include pre/post-test
counseling, nurse administered POCT and care coordination. Nurses will complete a comprehensive provider
training program prior to implementing the model. Three specific aims undergird our study: (1) Assess barriers
and facilitators to primary health center provision of SCD-POCT with a nurse champion model; (2) Finalize an
implementation plan for the intervention using Implementation Mapping and stakeholder input; and (3) pilot the
nurse champion model in two primary health centers and evaluate determinants and implementation costs. The
process of developing and implementing the model will be described using implementation science frameworks,
ethnographic observations, qualitative interviews and implementation mapping to identify barriers/enablers.
Nurse and client outcomes will be assessed by focus groups and in-depth interviews. Model implementation will
be assessed qualitatively and quantitatively. Acceptability, barriers, and enablers will be examined qualitatively
based on focus group and interview responses. A preliminary costing assessment will consider the nurses and
research study financial outlays. We expect our study to establish the...

## Key facts

- **NIH application ID:** 10218332
- **Project number:** 1R21DK125917-01A1
- **Recipient organization:** UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA
- **Principal Investigator:** Cheedy Jaja
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $176,144
- **Award type:** 1
- **Project period:** 2021-04-15 → 2022-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10218332

## Citation

> US National Institutes of Health, RePORTER application 10218332, The Nurse Champion Model for Sickle Cell Disease Early Diagnosis and Care Access (1R21DK125917-01A1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10218332. Licensed CC0.

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