Quality Indicator Development for Positive Screen Follow-up for Sickle Cell Disease and Trait.
Extensive variation exists in the follow-up of positive screens for sickle cell disease. Limited quality indicators exist to measure if the public health goals of screening-early initiation of treatment and enrollment to care-are being achieved. This manuscript focuses on the development of quality indicators related to the follow-up care for individuals identified with sickle cell disease and trait through screening processes. The authors used a modified Delphi method to develop the indicators. The process included a comprehensive literature review with rating of the evidence followed by ratings of draft indicators by an expert panel held in September 2012. The expert panel was nominated by leaders of various professional societies, the Health Resources and Services Administration, and the National Heart, Lung, and Blood Institute and met face to face to discuss and rate each indicator. The panel recommended nine quality indicators focused on key aspects of follow-up care for individuals with positive screens for sickle cell disease and trait. Public health programs and healthcare institutions can use these indicators to assess the quality of follow-up care and provide a basis for improvement efforts to ensure appropriate family education, early initiation of treatment, and appropriate referral to care for individuals identified with sickle cell disease and trait.
National Institute for Children's Health Quality, Boston, Massachusetts. Electronic address: efaro@nichq.org.
Elissa Z
EZ
Faro
Center for Policy, Outcomes and Prevention and Division of General Pediatrics, Stanford University, Stanford, California.
C Jason
CJ
Wang
National Institute for Children's Health Quality, Boston, Massachusetts; Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, New York.
Suzette O
SO
Oyeku
D026683:Advisory Committees / Q000592:standards; D000755:Anemia, Sickle Cell / Q000628:therapy*; D003697:Delphi Technique; D005500:Follow-Up Studies; D006801:Humans; D011634:Public Health; D019984:Quality Indicators, Health Care / Q000592:standards*