Study Highlights Opportunity to Improve Knowledge of and Familiarity with Thalassemia among Variety of California Healthcare Providers
Thalassemia is a red blood cell disorder that may cause a person to feel tired, weak, or short of breath (a condition called anemia) and can lead to organ damage and even death. In the United States, thalassemia is primarily found in Asian, Indian, and Middle Eastern communities and among those with ancestry from these areas of the world. Over the past few decades, the state of California has experienced a steady rise in Asian immigrants. This has led to an increase in patients with thalassemia in the state.
The increase in number of patients with thalassemia living in California highlights the importance of provider knowledge about thalassemia in order to effectively serve these patients in their communities. Provider education and dissemination of thalassemia treatment standards can not only improve knowledge about the disease, but also increase awareness about the importance of coordinating care among a multidisciplinary team of specialists. Improvement in these areas will help achieve the overarching goal of better outcomes and quality of life for patients with thalassemia.
About the Study
In 2012, the Centers for Disease Control and Prevention (CDC) initiated the Public Health Research, Education, and Surveillance for Hemoglobinopathies (PHRESH) project focused on using health monitoring data to enhance health promotion and prevention of complications. As part of California’s participation in this project, researchers developed a survey to collect information from providers in the state of California who care for patients with thalassemia to better understand their:
- Practice patterns;
- Barriers to providing care; and
- Educational needs.
Among the 644 providers who completed a survey, 574 of them reported ever having seen a patient with thalassemia in their practice and were included in the study.
We invite you to read the scientific summary of the study hereexternal icon.
Main Findings from the Study
Characteristics of Providers Who Responded to the Survey
- One-third of survey respondents were pediatric providers (35.7%), one-fifth were family practitioners (21.3%), and just under one-fifth were obstetrician/gynecologists (17.1%).
- More than half of the respondents reported seeing six or more patients with thalassemia over the course of their time in practice.
Provider Practice Patterns
- The majority of providers (43.2%) reported that they managed the care of their patients with thalassemia in combination with providers from other specialties and disciplines. However, only one-quarter (24%) had a coordinated care plan for all of their current thalassemia patients.
Barriers to Providing Care for Thalassemia Patients
- About half of the providers who responded to the survey had experienced some kind of barrier to caring for patients with thalassemia. The most commonly reported barriers were needing guidance or support from hematologists (19.7%) and lack of familiarity with guidelines for the treatment and management of thalassemia (17.1%).
- Family physicians had the highest number of providers who were unfamiliar with treatment guidelines (27%), which is concerning because they also frequently reported (52.5%) that they were solely or mainly responsible for the care of their thalassemia patients.
Educational Needs of Providers
- When asked about educational needs, providers most frequently expressed a desire for care and management guidelines (65.3%), health educational materials for patients (47.2%), and information on complications and clinical outcomes (32.1%).
Critical Gaps in Information & Future Work
This study did not assess additional provider characteristics that are likely to influence familiarity with thalassemia, such as ethnicity, age, and site of training. Future research can expand on work to include these factors.
Please visit the following links for more information
- 2019 Scientific Update: Transfusion Guidelines for Thalassemia Webinar
- Cooley’s Anemia Foundationexternal icon
- Standards of Care Guidelines for Thalassemia pdf icon[PDF – 576 KB]external icon
- Thalassaemia International Federationexternal icon
Reference for the Study
Radke T, Paulukonis S, Hulihan M, Feuchtbaum L. Providers’ Perspectives on Treating Patients with Thalassemia. JPediatr Hematol Oncol. 2019 Jul 25. Doi:10.1097/MPH. 0000000000001573. [Epub ahead of print]