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scientific articles

National Newspaper Publishers Association and Pfizer Rare Disease Report National Poll of African Americans on Sickle Cell Disease Awareness

key information

source: Pfizer Inc.

year: 2017

authors: Terri Adams PhD, Carolyn M. Byerly PhD, Lorenzo Morris PhD, Rubin Patterson PhD, Marie Plaisime MPH, Ashla Hill MA

summary/abstract:

BACKGROUND:

SCD is a genetically transmitted chronic blood disorder. SCD can lead to blockages among cell walls that slow or stop the flow of blood and consequently, the body’s oxygen level (National Heart, Lung, and Blood Institute, 2016). SCD is an illness that affects millions of people for the entirety of their lives (National Heart, Lung, and Blood Institute, 2016; Centers for Disease Control and Prevention, 2016). The most common type of SCD is known as sickle cell anemia and is caused when children inherit two abnormal hemoglobin genes, one from each parent.

According to the Centers for Disease Control and Prevention (CDC, 2016), SCD is especially common among ethnic minorities, including descendants of sub-Saharan Africa, and Spanish-speaking countries in the Western Hemisphere (South America, the Caribbean, and Central America). This is evidenced through incidence statistics.

 

METHOD AND SAMPLING:

The study took a quantitative survey approach, using correlational analysis. Data were gathered by way of a questionnaire developed by the Pfizer Rare Disease Team and the National Newspaper Publishers Association (NNPA), in coordination with researchers in the Howard University Public Opinion Group. Pfizer Rare Disease provided the funds for the study with the goal of obtaining scientific data to better understand participants’ awareness of the disease, their motivational mechanisms to seek information about the disease, and their perceptions of clinical trials associated with detecting and treating the disease. A correlational design was used for this study.

The national poll aimed to complete telephone interviews with a minimum of 600 individuals. A total of 741 surveys were completed, drawing from more than 20,000 telephone calls. The telephone interview is an accepted and often used approach for quantitative data collection; it is a principal survey method (Aday, 1996), and is the most widely used survey modality (Bernard, 2002). Telephone interviews are helpful because they provide wide geographic access, decreased research and travel costs, control of interviewer-procedures, and studies have shown that respondents are more relaxed and able to disclose sensitive information (Novick, 2008). Clearly, for the purposes of this study, the telephone interview was most suitable.

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