The Greek-American Diaspora: A Patient Population in Need of Increased β-Thalassemia Carrier Status Screening and Education

Objective: The true prevalence of β-thalassemia is unknown in the United States. Further, basic community knowledge of the disease and its pathogenesis has gone unexplored. The objective of this study was to assess disease knowledge in an at-risk Central Pennsylvanian community, and to assess self-reported carrier frequencies of β-thalassemia. To our knowledge, this is the first assessment of β-thalassemia disease knowledge in an American diaspora of an at-risk patient population. Methods: Participants were recruited in-person at Holy Trinity Greek Orthodox Cathedral in Harrisburg, PA. Permission for the on-site study was received from the Cathedral Dean and Parish Council in writing. Voluntary surveys were administered electronically via RedCap on personal devices and were offered in both Greek and English languages. Inclusion criteria were an age of 13 years and older and the ability to read in Greek or English. Participant demographics were summarized using descriptive statistics. Results: A total of 154 surveys were administered. Of those administered, 140 were completed and met inclusion criteria. Participants with (n = 113) and without (n = 27) Greek heritage were polled. Over 50% of the participants surveyed held a bachelor's degree or higher. Over 64% of all participants did not recognize the term β-thalassemia at all. Over 35% of younger participants (ages 13-44 years) and 34% of older participants (45 years and older) were unaware that the disease could be inherited. Around 50% of all responses were, “Not sure” when asked to identify symptoms of β-thalassemia minor. In order to identify how participants have come to know about the disease, participants were asked about educational sources that have influenced their understanding. Word of mouth was selected as the primary source of education (38.27% in older participants), or no source at all (37.28% in younger participants). Less than 10% of participants between ages 13-44 years had ever learned about β-thalassemia from a medical professional. Participants were asked, “How early can a β-thalassemia diagnosis be made?” Answer choices included “During pregnancy”, “During infancy”, “During childhood”, “Adulthood”, and “Not sure.” Around 45% and 56% of younger and older cohorts, respectively, selected “Not sure”. Out of 140 participants surveyed, 12 (8.57%) responded that they were known carriers of β-thalassemia trait or had β-thalassemia. Eleven reported having β-thalassemia minor (7.85%, Fig. 1),