Modeling the Complex Activity of Sickle Cell and Thalassemia Specialist Nurses in England

Specialist advanced practice nursing in hemoglobinopathies has a rich historical and descriptive literature. Subsequent workhas shown that the role is valued by patients and families and also by other professionals. However, there is little empirical research on the complexity of activity of these services in terms of interventions offered. In addition, the work of clinical nurse specialists in England has been devalued through a perception
of oversimplification.

The purpose of this study was to understand the complexity of expert nursing practice in sickle cell and thalassemia.

The work of nurses specializing in hemoglobinopathy care is complex and multidimensional and is likely to contribute to the quality of care in a cost-effective way. An understanding of this complexity can be used as an underpinning to establishing key performance indicators, optimum caseload calculations, and economic evaluation.