Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model.

Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research.

The emerging challenge of optimal blood pressure management and hypertensive syndromes in pregnant women with sickle cell disease: a review.

INTRODUCTION: Sickle cell disease (SCD) is one of the most common hemoglobinopathy, affecting a considerable proportion of black populations of African origin, Middle East and in the Indian sub-continent. Women with SCD are more likely to experience adverse pregnancy and delivery outcomes. Hypertensive diseases in pregnancy such as preeclampsia and eclampsia are more common in women with sickle cell disease. Areas covered: This review examined the influence of hypertension and SCD in pregnancy, and provides the preliminary evidence that the traditional systolic and diastolic blood pressure thresholds for hypertensive disorders such as pre-eclampsia and eclampsia may require reassessment in pregnant women with SCD. The causes of maternal and perinatal morbidity and mortality, hypertensive complications of pregnancy in women with and without sickle cell disease were reviewed. A MEDLINE database search using medical subject headings (MeSH) and keywords for articles regarding sickle cell disease, pregnancy and hypertension was performed. Expert commentary: Pregnancy in women with sickle cell disease is associated with high maternal and perinatal morbidity and mortality. Using the existing thresholds for diagnosis and treatment for hypertensive disease in pregnancy without adjustment to accommodate for the lower systolic and diastolic blood pressure in those with sickle cell disease may worsen an already poor maternal and perinatal outcome in this population.