Care Utilization Patterns in Sickle Cell Disease: Managing Pain and Care Transitions in AYAs

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Opioids are commonly precribed for the treatment of both acute and chronic pain.

Sickle cell disease (SCD) is a very common inherited blood disorder in the United States. Injury from SCD, which often starts at birth, accumulates over time and can cause significant end-organ damage and ischemic tissue injury, leading to fatigue, pain, and other clinical complications. During a session on the first day of the 59th Annual Meeting & Exposition of the American Society of Hematology, Atlanta, Georgia, researchers presented data on opioid utilization patters in SCD, particularly in the adolescent and young adult (AYA) patient population.

Opioids are commonly prescribed in these patients for treatment of acute pain episodes as well chronic pain that cannot be otherwise managed, and many patients with SCD require long-term opioid therapy to achieve adequate pain relief. Given limited real-world data on current opioid treatment patterns in this patient population, the current study was undertaken to describe opioid utilization patterns in a large cohort of SCD patients in the United States.

Samir K. Ballas, MD, of Thomas Jefferson University, presented results from their study, which used the Truven MarketScan commercial and Medicaid administrative claims databases to identify patients with SCD.1 The claims, for each year annual period between 2009 and 2014, included patients 9 months and older at the first indication of SCD. Prior year utilization of opioids and morphine equivalent daily dose (MEDD) was measured for each cohort using outpatient pharmacy claims.

The authors reported results from their analysis on 2619-3285 commercial and 4807-7007 Medicaid patients with SCD identified in each of the annual cohorts. The mean age was 27 years in the commercial cohorts and 18 in the Medicaid cohorts.


The authors found that while opioid utilization remained stable across the study period, an increasing number of Medicaid patients used opioids (65%-70%) compared with patients on commercial insurance plans (54%-57%); additionally, the average number of claims for the Medicaid cohorts were higher, compared with age-matched commercial cohorts. Compared with the 30-day opioid use in the general US population, the SCD population had higher opioid use in the previous year.

A marked increase in opioid use was noted in patients with a vaso-occlusive crisis, particularly in the 12-17 age group for Medicaid enrollees and 18-30 age group for commercial enrollees. This, Ballas noted, is the transition age from pediatric to adult care. The analysis found that Medicaid patients reached a utilization level of a minimum of 4-month supply of opioids earlier (age 18-30) than commercial patients (age 31-44) and had double the average days supplied in each adult (age ≥18 years old) age group.

Ballas concluded that transition to adult care increased opioid use in the SCD population of their study cohort, which could reflect chronic or accumulated damage from SCD.

Mariam Kayle, PhD, RN, from Northwestern University, represented authors of a collaborative study that evaluated care utilization in 339 AYAs (12-27 years) with SCD, if they had at least 2 pediatric SCD clinic encounters between January 1989 and July 2015.2 Healthcare utilization was defined as clinic or emergency department (ED) visits and hospitalizations.

This particular study cohort (55% male; 96% black; and mean age, 24.5 years) had 10,848 clinic encounters; 240 AYAs (71%) had 3840 hospitalizations and 197 (58%) had 3152 ED encounters. A majority of patients in their study cohort had low clinic (n = 206, 60.77%), hospital (n = 171, 71.25%), and/or low ED (n = 146, 74.11%) utilization.

The authors noted several factors that influenced higher clinic utilization in their AYA cohort:

  • Iron overload
  • Lower extremity ulcers
  • Cerebral infarct
  • Hydroxyurea
  • Attention deficit disorders
  • Distance from clinic

Higher hospital utilization, Kayle shared, was associated with:

  • Chronic pain
  • Long-acting narcotics
  • Hydroxyurea
  • Intellectual disabilities
  • Depression

ED utilization rates were determined by:

  • Hip/shoulder necrosis
  • Long-acting narcotics
  • Major depression
  • Distance from clinic


  1. Ballas SK, Kanter J, Agodoa I, et al. Opioid utilization patterns in United States patients with sickle cell disease. In: Proceedings from the 59th Annual Meeting and Exposition of the American Society of Hematology; December 9-12, 2017; Atlanta, GA. Abstract 130.
  2. Kayle M, Shah N, Tanabe P, et al. Health care utilization trajectories and associated factors for transitioning adolescents/young adults with sickle cell disease. In: Proceedings from the 59th Annual Meeting and Exposition of the American Society of Hematology; December 9-12, 2017; Atlanta, GA. Abstract 131.