New Sickle Cell Journal Supplement Highlights Impact and Research Advancements Made from Federally Funded Activities

SCDThe supplement is available online at the AJPM website.

The American Journal of Preventive Medicine (AJPM) today published a supplement supported and coordinated by the Centers for Disease Control and Prevention (CDC) describing sickle cell disease (SCD) research activities that have made significant strides during the past decade toward improving the care and treatment of those living with SCD.

SCD is a group of inherited red blood cell disorders that affect millions of people worldwide. SCD can cause pain and other serious problems, such as infection, acute chest syndrome (a serious lung-related complication that causes lower oxygen levels in the blood), and stroke, and can lead to lifelong disabilities and reduce average life expectancy.  The articles highlight the public health impact of SCD, and all the critical scientific work that is being done to reduce the burden of SCD on people living with the condition, as well as their families, healthcare providers, and healthcare systems. The primary audience for this supplement includes healthcare providers, such as primary care providers, hematologists, and pediatricians who provide care for children with SCD, as well as hospital leaders.  Others who may benefit from this information include public and private insurers; radiologists and radiology technicians; pain management specialists; emergency care providers; quality improvement practitioners; health services researchers; hospital administrators; policy makers; IT developers; public health professionals; sickle cell advocates; patients, families and caregivers; and the general public.

What led to the development of the supplement?

Despite the progress made in the care of people with SCD over the past 4 decades, there is much more work to be done before all people with SCD consistently receive high-quality, equitable care.  In recognition of this, the American Society of Pediatric Hematology and Oncology (ASPHO) convened a Sickle Cell Summit in June 2007. Summit participants discussed challenges affecting the sickle cell community, including

  • The inconsistent use of proven therapies;
  • Poorly defined data on status of health care and outcomes for those living with SCD; and
  • The unknown number and characteristics of people living with SCD.

To address these challenges, summit participants agreed to target their activities in five main areas:

  1. Speaking with a unified voice;
  2. Ensuring access to care from knowledgeable healthcare providers;
  3. Conducting population-based public health monitoring to measure health outcomes;
  4. Conducting basic, clinical, translational, and health services research; and
  5. Enhancing the role of the community.

The papers in this journal supplement highlight key improvements made since the Sickle Cell Summit in the targeted areas described above, and achieved through activities sponsored by the CDC, the Health Resources and Services Administration (HRSA), and the National Institutes of Health (NIH).

What is included in the AJPM supplement?

The work described in the supplement:

  • Shows that many children with SCD don’t receive important preventive services despite the availability of evidence-based interventions to prevent several serious complications of SCD, including pneumococcal vaccine to prevent chronic neurologic disability and transcranial Doppler monitoring and subsequent treatment to prevent early stroke.
  • Illustrates promising health system changes that can result in improvements in health care for people with SCD (for example, changing the rate of transcranial Doppler screening for young children from 25% to 100%); and
  • Shows the importance of obtaining data to monitor SCD quality healthcare measures with the goal of ultimately improving health and health care for those living with this life-long condition

The articles included in the supplement:

Introductions

  • Sickle Cell Disease: A Continued Call to Action
  • Sickle Cell Disease: A Roadmap for Getting to Excellence Everywhere
  • Sickle Cell Disease, 2015: A Patient Advocate’s Perspective

Access to Care

  • Implementation of a Process for Initial Transcranial Doppler Ultrasonography in Children with Sickle Cell Anemia
  • Improving Sickle Cell Transitions of Care Through Health Information Technology

Population-Based Surveillance

  • Hydroxyurea Use in Young Children With Sickle Cell Anemia in New York State
  • Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources

Health Services Research

  • Chronic Opioid Therapy and Central Sensitization in Sickle Cell Disease
  • Quality Indicator Development for Positive Screen Follow-up for Sickle Cell Disease and Trait
  • Newborn Screening Programs and Sickle Cell Disease: A Public Health Services and Systems Approach
  • Care Coordination for Children With Sickle Cell Disease: A Longitudinal Study of Parent Perspectives and Acute Care Utilization
  • Mistrust of Pediatric Sickle Cell Disease: Clinical Trials Research

Role of the Community

  • Community Health Workers as Support for Sickle Cell Care: A White Paper
  • Improved Guideline Adherence with Integrated Sickle Cell Disease and Asthma Care

What is CDC’s role in the supplement?

CDC initiated the supplement and coordinated with the AJPM and the authors during the manuscript development process.  CDC also funded Open Access so that the articles will be available to everyone, free of charge. SCD is a priority area for CDC.  Many strides have been made, yet more work is to be done.  CDC is committed to applying the findings from work done on SCD toward improving treatment and services for those with the condition.

What You Can Do

Spread the word! We encourage you to share information about the supplement with your colleagues and friends.  We will be promoting the supplement on Twitter at @CDC_NCBDDD. We invite you to comment, re-post, re-tweet, and follow @CDC_NCBDDD! For more information about SCD, please visit http://www.cdc.gov/ncbddd/sicklecell/index.html.  Thank you for your continued support and for your interest in learning more about this condition.

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