Integrating Nurse Champion Model for Group Reproductive Genetic Counseling forSickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation ScienceStudy - ABSTRACT:
Sickle cell disease (SCD) is a significant contributor to child morbidity and mortality. In sub-Saharan Africa (SSA),
90% of the children born annually with SCD will die before their fifth birthday, often undiagnosed. To decrease
the high birth incidence of SCD requires identifying at-risk individuals through carrier screening, genetic
counseling, and informed reproductive decision-making. The professional genetic counseling workforce capacity
is severely limited in SSA. Nurses, however, comprise the single largest category of available health workers in
SSA. Therefore, upskilling of nurses to provide genetic counseling offers a logical alternative workforce solution.
Our primary objective in this three-year R21 proposal is to assess the acceptability and feasibility of a multi-
faceted, integrated Nurse Champion model to deliver genetic counseling and carrier screening for SCD. Our
strategy is to use a type-2 hybrid implementation-effectiveness design to evaluate patient uptake of services and
satisfaction, organizational readiness, provider acceptance, workflows, and resource use. Sierra Leone, a SCD
endemic country and location of our current SCD research and clinical programs, presents an ideal study site.
In this feasibility study, the aims include developing and assisting local hospitals in implementing the model,
evaluating processes/determinants of model’s implementation, and evaluating the model’s acceptability and
effects on provider and client outcomes. Using implementation science frameworks, our research team will
iteratively engage key stakeholders to inform an intervention plan. The evidence-informed Nurse Champion
platform will frame the implementation model and include pre-test counseling and nurse-administered genetic
screening. Nurses will complete a comprehensive provider training program before implementing the model.
Three specific aims undergird our study: (1) Assess barriers and facilitators to primary health center provision of
genetic counseling 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. We will describe developing and implementing
the model using implementation science frameworks, field observations, qualitative interviews, and
implementation mapping to identify barriers/enablers. The intervention will be evaluated qualitatively and
quantitatively. A preliminary costing assessment will consider the nurses and research study financial outlays.
This research's main outcome is expected to be a replicable and scalable implementation model that will foster
genetic counseling and carrier screening for SCD. At the conclusion of this project, we expect to have a tested,
scalable model for implementing and maintain genomic health service intervention for nurses in SSA that could
be readily adapted to low-resource settings in the US, where there is a profound need for such approaches.
