Background: Measurement of access to care and utilization for adults with sickle cell disease (SCD) compared to children has been primarily through analysis of administrative databases. We report here the first comparative results of the A dult S ickle C ell Q uality of Life Me asurement Information System (ASCQ-Me) access and utilization measures for adolescents vs. adults.

Methods: Patients (N=186, 55% female) ages 15 and older were enrolled in the Start Healing in Patients with Hydroxyurea (SHIP-HU) clinical trial, which required them to see a SCD specialist. Patients were either seen in 3 adult-oriented clinic sites, or seen in 3 pediatric-oriented clinic sites. At baseline, ASCQ-Me queried care seeking and numbers of visits for both ambulatory and Emergency Department (ED) care.

Results: Fully 92% had a usual care doctor or nurse, their SCD provider, whom they saw on average 3.3 times in the previous 12 months (p=0.7074, patients seen in adult-oriented clinics [A-Cl] vs. patients seen in pediatric-oriented clinics [P-Cl]).^ At baseline, 77.7% of A-Cl and 89.4% of P-Cl were on HU (p=0.0769). In the past 12 months, 87% of A-Cl vs. 73% of P-Cl had tried to make an appointment to see a doctor or nurse (p=0.0321). Compared to all other responses (never, sometimes, usually), only 36% of A-Cl vs. 49% of P-Cl said they could always get an appointment soon enough (p=0.1967).

A total of 64/135 A-Cl (47%) vs. 10/47 P-Cl (21%) reported no crises in the preceding 12 months (p=0.0017). Among those reporting home-managed crises without medical contact, the mean number was 2.0 for A-Cl vs 2.7 for P-Cl (p=0.0241). ^ Fully 66% of A-Cl vs. 43% of P-Cl at some point delayed/ avoided ED care for crises (p=0.0039). Reasons for avoiding ED care included prior bad experiences (very, quite, or somewhat important for 63% of A-Cl vs. 45% of P-Cl, p=0.1458) and health insurance issues (very, quite, or somewhat important for 30% of A-Cl vs. 40% of P-Cl, p=0.3680).

Still, 76% of A-Cl vs 54% of P-Cl reported ED visits for crises (p=0.0043). The mean number of ED visits was 2.2 for A-Cl vs. 1.2 for P-Cl (p=0.0003).^ Compared to all other responses (never, sometimes, usually), only 19% of A-Cl vs. 38% of P-Cl said they could always get ED care as soon as they wanted (p=0.0540)--49% of A-Cl vs. 16% of P-Cl had to wait more than an hour to be medicated in the ED (p=0.0031; 32% of A-Cl vs 8% of P-Cl had to wait more than 2 hours (p=0.0156).

Conclusions: In SHIP-HU, ambulatory SCD care was more often sought by adults than adolescents. A larger percentage of adults reported no crises, but they delayed ED care more often than adolescents when they had crises. Nonetheless, more adults than adolescents reported ED visits for crises. ED wait times for analgesia were far worse for adults than for adolescents. These data confirm both anecdotal reports and claims data studies showing poorer access to SCD care for adults than for adolescents, and more ED use but longer ED wait times for adults than for adolescents.

* Based on 1-5 scale

^Highest category=4 or more.


Lottenberg: Pfizer: Consultancy.

Author notes


Asterisk with author names denotes non-ASH members.

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