Thalassemia Management Checklists

Quick reference guides to reduce disparities in the care of patients with transfusion-dependent thalassemia

By Ashutosh Lal, MD

The prevalence of thalassemia in the United States is rising due to immigration, new births, adoptions, and improved survival. Advances in monitoring and treatment have significantly reduced morbidity and mortality in transfusion-dependent thalassemia (TDT).

Thalassemia Treatment Centers (TTCs) utilize a comprehensive care model to provide contemporary care. But, a majority of the patients with TDT are not managed at such centers owing to long travel distance and lack of insurance portability. Lack of access to specialized care increases the risk of complications, shortens survival, and reduces health-related quality of life.

Recently, there has been a national effort to standardize management of TDT and reduce disparities in access to and quality of care. This effort has been led in part by the multi-site Thalassemia Western Consortium, which held its fourth annual meeting in November 2018.

The backbone of the initiative to reduce disparities in quality of care for TDT has been the development of Thalassemia Management Checklists (TMCs), a set of quick reference guides that provide decision support to physicians managing TDT. Physicians are more likely to consult a quick reference guide -- such as these -- instead of textbooks, journals, or handbooks of comprehensive guidelines. TMCs cover most routine management of TDT while encouraging expert consultation for complex decisions.

The final product is in the form of three separate documents, each covering a single topic -- thus allowing easy access to the summary information while displaying detailed information on demand. Over the next three years, adoption of TMCs and their impact on patient care will be formally evaluated in selected regions. Patient access to TMCs will increase knowledge and promote self-advocacy.

Designing the TMCs

Each checklist has three sections:

  1. Summary table with essential information
  2. Literature review and rationale for the recommendations
  3. Bibliography of citations made available with a link provided in the TMCs

Thalassemia Management Checklists