For patients with rare diseases, knowledge about the condition and self-advocacy can be important factors in receiving appropriate care.
Even among relatively engaged patients, knowledge gaps about best practices in blood transfusion care exist, but improved data sharing between providers and continued patient education could further improve transfusion safety, according to a paper recently published in Frontiers in Medicine by Georgia Health Policy Center researchers.
Chronic blood transfusions, which are used to manage clinically significant forms of thalassemia, carry risks of potentially fatal complications. Evidence-based guidelines can minimize these risks, but the real-world use of these guidelines requires a two-pronged approach: a communication strategy that informs both patients and providers.
This study assessed thalassemia patients’ knowledge of transfusion, complications, and guidelines; their experience of clinicians’ following guidelines; and their perspectives on ways to store and share personal transfusion data.
Of the 32 patients surveyed, most report receiving transfusions every two to four weeks. Most patients were aware of the five practice guidelines, but depth of knowledge varied by guideline. Gaps in provider practices are possible as reflected in patients’ reported experiences.
“Patient knowledge of evidence-based care guidelines prompts self-advocacy to better understand and communicate with providers about treatment, therefore reducing transfusion complications in thalassemia,” says lead author Sashoy Patterson. “Patients are at a higher risk when a complete transfusion history, including a history of an antibody response to previous blood transfusions, is not available to providers. A nationwide antibody registry could improve data sharing without placing extra burden on patients.”
An antibody registry remains the most promising approach for ensuring that providers have accurate and current data to inform transfusion orders for patients with blood disorders, wherever they present for care.
As part of the REdHHoTT project, which aims to characterize and reduce complications of therapeutic transfusion among people with thalassemia and sickle cell disease, the Georgia Health Policy Center and clinical partners tested the feasibility of implementing an antibody registry system at multiple Georgia hospitals. Though the initial REdHHoTT effort was unsuccessful, it offered lessons that may contribute to future efforts.
Coauthors of the thalassemia patient knowledge study include Regena Spratling, from the Byrdine F Lewis College of Nursing and Health Professions at Georgia State University; Sashoy Patterson and Ashley Singleton from GHPC, and Vivien Nsonwu from Meharry Medical College.
Read the full study here.