Community Survey of Knowledge of Thalassemia

Background:

The patient demographics at the Northern California Comprehensive Thalassemia Center (NCTC) at UCSF Benioff Children's Hospital Oakland (BCHO), show 475 patients with the largest ethnic groups being: 14% Chinese, 10% Laotian, 6% South Asian Indian, 5% Vietnamese, 5% Filipino and only 5% Italian. 54% of all patients receive chronic blood transfusions, 22% receive period transfusions. Among the transfusion-dependent patients, 59% are South East or East Asian, 17% South Asian, 7% are from the Middle East and 9% are Italian. The NCTC patient demographics reflect the changes in US migration over the past 40 years, where the number of Asian immigrants has increased by 21.4%. In 2009, California had 32.8% of the total Asian immigrants in the U.S, which reflects the largest immigrant group affected by thalassemia in the NCTC population.

California's statewide newborn screening data shows that Asians have the highest rates of thalassemia syndromes, where the prevalence of Hemoglobin EE in Southeast Asians is 792 per 100,000 and Hemoglobin H disease is 404 per 100,000 in Asians. Despite this, there has been a lack of thalassemia education and outreach to the at-risk minority groups. While it is easy to assert the lack of outreach has to do with language barriers and mistrust of Western medicine from the immigrant population, community based interventions suggest larger more significant challenges.

Methods:

We developed a community survey designed to gauge general community knowledge of thalassemia and where they seek health care information. Responses were gathered from 91 subjects to date. The first group was high school students ranging from 15-18, and the second group was adults at a community church. In conjunction with the survey, both groups also participated in a thalassemia educational session.

Results:

The participants were predominantly of Chinese ethnicity (77%) and 50% were born outside of United States. High school students comprised 57% of the subjects, while 20% were older than 45 years. The survey demonstrated that the base knowledge of thalassemia is low. A large majority of participants (71%) had never heard of thalassemia, while 42% were unsure if their friends or family have thalassemia. However, 66% of the participants had heard of anemia. Half of the participants (51% ) were unsure if it would be useful for them to know their carrier status. Significantly, 41% believed, or were uncertain, that their community would discriminate against thalassemia carriers. Furthermore, after being informed that their child could be at risk for a serious blood disease, 36% still did not want to get tested before having a child, and 40% did not want their family members tested. One-third (33%) of participants were not comfortable with sharing their own health issues with family, and 58% did not seek medical information from family members. Physicians were the main source of medical information for 84% of participants. A majority ( 57%) of the participants wanted to receive more information about thalassemia from their health care providers.

Conclusion:

These data show that the awareness of thalassemia in the Asian immigrant population is very low, although most had some familiarity with anemia. The disinterest and uncertainty to seek more information about thalassemia could be related to the potential consequence of discrimination within the community. These findings suggest that there are internal barriers within a community and extended families with not only to the understanding of thalassemia but to the willingness to share and discuss knowledge about the genetic disease. As a result, outreach efforts will require a shift in the framework of how thalassemia is presented to the community. Perhaps, labeling thalassemia as a genetic disease could have cultural and social implications for the community, which can create resistance to outreach efforts. Using basic education approaches, community members can first be engaged through the relatable condition anemia, which can be used to scaffold a connection to thalassemia. This approach also highlights the importance of working with primary care providers because they are the main source of medical information for the community, and can initiate conversation about testing for thalassemia and genetic counseling.