Are family physicians comfortable treating people with sickle cell disease?

A photo of three medical professionals

Quality care and treatment of people with sickle cell disease (SCD) can result in lower healthcare costs and reduced rates of illness, and even death.  It is known that people with SCD can benefit from:

  • Programs that prevent complications of SCD,
  • Strategies to manage pain,
  • Use of hydroxyurea (the only currently available FDA-approved medication for preventing SCD-related health problems), and
  • Blood transfusions.

However, there is little information on current practices and use of these therapies by family physicians for children and adults with SCD.  To help drive the development of programs designed to improve the care of people with SCD, researchers need a better understanding of:

  • How family physicians are currently caring for people with SCD,
  • How comfortable family physicians are treating patients with SCD,
  • How much family physicians know about SCD-related health problems, and
  • How concerned family physicians are about potential SCD-related health problems.
What is Sickle Cell Disease (SCD)?

People are born with SCD.  It is an inherited life-long disease that can run in families.  SCD affects how red blood cells work.  Healthy red blood cells are round and shaped like a donut, and they easily move through small blood vessels to carry oxygen to all parts of the body. SCD causes the red blood cells to change their shape from the usual donut shape to a C-shape, like the farm tool called a “sickle.”  The sickle cells get caught on the walls of tiny blood vessels, stick to one another and can’t squeeze through.  They can form clumps inside blood vessels, blocking the flow of blood, which can cause severe pain and other serious problems. These problems can include infections, organ damage, and blood vessels clogged with sickle cells in the lungs, called “acute chest syndrome.”  

About this Study

The journal Anemia has published a study in which researchers analyzed survey responses related to knowledge and attitudes toward care and treatment of patients with SCD.  Surveys were submitted by 1,042 practicing physician members of the Council of Academic Family Medicine organizations.  The survey was conducted between November 2013 and January 2014, and was designed to identify areas in which family physicians may need additional knowledge about care of patients with SCD.  It also contained questions related to level of comfort in treating patients with SCD, concerns about SCD-related health problems, willingness to treat patients, and usefulness of clinical decision support tools (tools that provide information to help physicians make decisions about patient care, such as computerized alerts and reminder systems).  This study gave researchers a better understanding of the general practice patterns of the surveyed physicians and their overall attitudes toward SCD care and treatment.  Key findings from this study are highlighted below and we invite you to read the article’s abstract hereExternal.

Main Findings from this Study

  • In general, academic family physicians see few SCD patients and they are concerned with their ability to treat SCD and SCD-related health complications
    • Over half of surveyed physicians did not have any patients with SCD in their practices
    • Less than one 1 in 4 surveyed physicians had five or more patients with SCD in their practices
    • Only 1 in 5 surveyed physicians reported being comfortable treating patients with SCD
      • About 1 in 3 were comfortable treating patients who require red blood cell transfusions
      • Less than 1 in 4 were comfortable treating patients who require hydroxyurea treatment
      • Less than half were comfortable managing patients’ pain
  • Nearly 3 out of 4 surveyed physicians believed a clinical decision support tool would be helpful for aiding in the treatment of SCD and/or helping to avoid SCD-related health problems

Future Directions

  • Further study is needed on whether or not a clinical decision support system could improve the quality of care for, and help control SCD-related health problems of people living with SCD

More Information

Key Findings Reference

Arch G. Mainous III, Rebecca J. Tanner, Christopher A. Harle, Richard Baker, Navkiran K. Shokar, and Mary M. Hulihan. “Attitudes toward Management of Sickle Cell Disease and Its Complications: A National Survey of Academic Family Physicians.” Anemia. 2015. Article ID 853835. doi:10.1155/2015/853835.