Young Sickle Cell Adult Patients Experience Increased Fragmented Care

Anjlee Mahajan, MD

Nearly 20% of young adults or adults with sickle cell disease were admitted to 5 or more hospitals over a seven-year period, according to new research presented at the American Society of Hematology (ASH) 2019 Annual Meeting in Orlando.

What’s more, three-fourths of observed young adults aged 18—25 years old with sickle cell disease experienced fragmented care.

A team of investigators from University of California, Davis School of Medicine analyzed thousands of health records of patients with sickle cell disease and discovered that while 78% of young adults with the disease were admitted to multiple care facilities, 60% of children with the disease received care at only 1 facility. The findings suggest that fragmentation of care starts in early adulthood.

More people work to bring children into the healthcare system, while as patients age, they have to manage their healthcare themselves, senior study author Anjlee Mahajan, MD, of University of California, Davis School of Medicine, noted.

She suggested young adults might move to a new town and often experience shifts in healthcare.

“That point is when their care gets fragmented,” Mahajan said in a statement.

Mahajan and her team combed through nearly 7000 health records of patients with sickle cell disease who visited California-based medical centers from 1991—2016. The investigators divided the patients into 3 age groups: 10–17 (childhood), 18–25 (young adulthood), and 26–33 (adulthood).

Of the 1122 young adults, 91.3% were African Americans—43.9% male and 56.1% female. Many (42%) of patients in that population had Medi-Cal insurance, while 26.7% had private insurance as their first reported health insurance. The young adults who had private insurance rather than Medi-Cal were at lower risk of fragmentation (IRR, 0.85; 95% CI, 0.78—0.93; P = .0002). Patients without insurance were at higher risk (IRR, 1.45; 95% CI, 1.22—1.72; P <.0001)

Young adults primarily had less than 10 inpatient admissions (44%), while 24.6% had at least 30 during their young adult period. Patients with more admissions had a higher risk of care fragmentation (IRR for 10—19, 1.42; 95% CI, 1.29–1.57; IRR for > 30 admissions, 2.13; 95% CI 1.98—2.43; P <.0001).

Only 22% of the young adults were seen at 1 inpatient facility. Nearly 26% were seen at 2, 30.2% at 3—4, and 21.8% were seen at 5 or more.

If a patient in the young adult cohort was sometimes admitted to a sickle cell disease specialty care center (IRR, 2.19; 95% CI 1.98—2.43; P <.0001) or never (IRR, 1.15; 95% CI, 1.15—1.46, P <.0001) had an increased risk of fragmented care compared to patients who were always admitted to a specialty care center.

Young adults with more admissions, regardless of location, were at a significantly increased risk of death (10-19 HR, 2.36; 95% CI 1.13—4.91; P = .022; 20-29 HR, 4.25; CI 2.03—8.92, P = .0001; > 30 admissions HR, 7.79; 95% CI 4.09—14.83; P <.0001).

Future studies could be conducted identify the impacts of fragmented care and how to support consistent care throughout a patient’s transition into adulthood, Mahajan concluded.

The study, “Fragmentation of Care for Young Adults with Sickle Cell Disease in California" was presented Saturday at ASH 2019.