Sickle Cell Disease Patients Lack Education on Transfusions

September 17, 2020

Interview results show patients can generally recall giving transfusion consent, but not information on the procedures benefits and risks.

Patients with sickle cell disease generally lack comprehensive knowledge of blood transfusion options, according to findings from a survey which inform the need for more patient-centric literacy on their care.

In new data from a team of investigators at Georgia State University, surveyed patients with sickle cell disease reported an unpleasant, disorienting experience with transfusions which allowed for little to no autonomy on their part.

The team, led by Raymona H. Lawrence, DrPH, MPH, MCHES, of the Jiann Ping Hsu College of Public Health, advocated for improved shared decision-making among sickle cell patients and physicians.

Lawrence and colleagues sought to conduct a series of interviews with sickle cell disease patients based in Georgia, in alignment with the Georgia Registry and Education for Hemoglobinopathies and Hemovigilance/Transfusion Therapy project. The state-based effort was developed to address gaps in patient access to transfusion information and guidelines, as well as statewide surveillance for transfusion occurrence and post-procedure complications.

“The causes of preventable transfusion-associated complications are numerous and often occur because adherence to disease-management and transfusion best practices is inconsistent,” investigators wrote. “Also, there is currently no unified system that provides ongoing, statewide education to health-care providers, blood banks, patients, and families about transfusion indications and the prevention and management of transfusion-related complications.”

Their series of interviews queried patients on their knowledge of transfusions and complications, their attitudes and preferences surrounding means by which transfusions are stored and shared, and overall perspective on the transfusion experience.

All reported 22 interviews, about 20-30 minutes in length, included African American patients with sickle cell disease aged 18 years or older who had at least 1 transfusion.

Patients possessed what investigators deemed a “basic knowledge” of blood transfusions and their complication risks. Comprehension and use of complex health information surrounding transfusions was varying, with anecdotal references to antibody development and blood levels.

Regarding transfusion history storage and sharing, patients pointed to advantages and pitfalls with the currently used systems. Anecdotes referred to currently recommended mobile phone apps which can store and provide access to patient transfusion records as “more for the younger generation” of sickle cell patients.

Lastly, patients largely corresponded to the transfusion experience as unpleasant, but overall beneficial. Some described instances of consent form-signing or compliance with care being based on fear or compromising circumstances.

“Patients were able to offer few other suggestions for improving the transfusion experience because they were often in the midst of a pain crisis when they received them, and not fully aware of the process,” investigators wrote.

The team observed their findings support previous research showing that while patients may recall consenting to transfusions afterward, they may not retain the information on which they would base such a decision—namely, the risks and benefits.

“Previous researchers have observed that patients suffering from other life-threatening medical conditions tend to trust their physicians’ judgment regarding transfusion and rarely question providers about risks, benefits, and alternatives,” they wrote.

The implications from these interviews are similar to those currently headlining examples of improved sickle cell protocol: patient-centered care that included education on transfusions and more legitimate shared-decision making.

In an interview with HCPLive®, Ted Love, MD, chief executive officer of Global Blood Therapeutics (GBT), discussed how healthcare disparity has influenced the lack of patient-centered education and access to physicians.

As Love noted, sickle cell specialist availability is among the greatest drivers of limited patient knowledge and confidence of care for their condition.

“It’s not accidental, we’ve actually created this problem,” Love explained. “We do not pay physicians properly for treating patients that are on Medicaid, for example. And if you don’t pay physicians appropriately, then that’s effectively a disincentive.”

Lawrence and colleagues concluded on a note that emphasized the need for sickle cell disease patient education, regardless of their available care team.

“In order to reduce transfusion-related complications, patients must understand clinical practice recommendations for transfusion, including best practices for avoiding transfusion-related complications and the importance of advocating for themselves,” they wrote.

The study, "Blood Transfusion: Knowledge, Perspectives, and Experience of Individuals With Sickle Cell Disease," was published online in the Journal of Patient Experience.