Published Online: January 19, 2015
Surabhi Dangi-Garimella, PhD
While innovations in drug development improve patient health, care management plans in hospitals and academic health institutes are evolving simultaneously to allow for better patient care at reduced costs. That was the conclusion of presenters at a Health Services and Outcomes Research session on sickle cell disease (SCD) management, part of the 56th Meeting of the American Society of Hematology, held in San Francisco, California, December 6-9, 2014.
SCD, a commonly inherited blood disorder resulting from abnormal hemoglobin, is associated with lifelong disabilities and can reduce life expectancy. The disease affects between 90,000 and 100,000 people in the United States,1 and a study published in 2009 in the American Journal of Hematology estimated that the annual cost of medical care alone for these patients exceeds $1.1 billion.2
Jane S. Hankins, MD, MS, associate professor, St. Jude Children’s Research Hospital, presented the model being evaluated at her institute to manage the transition of pediatric patients with SCD into adult care while avoiding the overutilization of healthcare.
Hankins explained that while most children with SCD survive into adulthood, healthcare utilization (HCU) is highest following transfer to adult care. Episodes of acute care or emergency department (ED) visits and hospitalizations are the primary drivers of these costs, she said. A review of HCU for SCD from ED visits and inpatient care in 8 states has previously shown that young adults (18 to 30 years old) are more than twice as likely to visit the ED as patients aged 10 to 17 years or adults aged 31 to 45 years. Young adults also have more inpatient stays and the highest percentage of frequent acute care visits.3 Hankins pointed out that disease progression alone was not responsible for the upsurge in HCU. She rationalized that the failure to establish a suitable medical home following pediatric care is also a driver of higher HCU.
At St. Jude, independent SCD programs—1 adult and 1 pediatric—partnered to create the Young Adult Transition Clinic (YATC) in January 2012 for patients aged 18 to 25 years.4 YATC became the model for addressing inadequate placement of young adults into adult care. The YATC at the St. Jude-Methodist Sickle Cell Disease Transition Clinic is located at the adult hospital and signifies 2 levels of overlap between pediatric and adult care: 1) comanagement by a pediatric hematologist and an internist, and 2) case management by a designated registered nurse coordinator in the pediatric setting at age 17 years, which continues in the adult setting up to age 25 years.4 When asked why the age limit is 25 years when young adults can transition into adult care as late as 30 years of age, Hankins explained that the cutoff was limited by the fact that there was only a single RN available. All visits followed a detailed plan of care, including systematic orientation to adult care, disease-related education, and self-management strategies, she said.
The research group at YATC estimated the incidence rates (IRs) and incidence rate ratios (IRR) for HCU and health maintenance visits for the 2-year interval preceding departure from pediatric care, and the first 2 years following transfer to adult care, using a repeated measures model for HCU counts. They used a disease-specific survey on SCD pain management, before (pre-score) and immediately after (post score) an educational session by the nurse coordinator during both pediatric and adult care. These health literacy results were then compared using Wilcoxon signed rank test.4
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