Fragmentation of care common among young adults with sickle cell disease
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ORLANDO — Young adults with sickle cell disease experienced fragmentation of health care during the transition period after childhood, according to the results of a retrospective study presented at ASH Annual Meeting and Exposition.
Researchers also found associations between the frequency of inpatient hospitalizations for disease-related symptoms among young adults and increased mortality risk.
“Sickle cell disease causes significant morbidity and mortality for those who are affected. In the United States, children are more likely to receive comprehensive care than their adult counterparts, and this may lead to improved outcomes,” Anjlee Mahajan, MD, assistant clinical professor in hematology/oncology and internal medicine at University of California Davis School of Medicine, told Healio.
Conversely, young adults exist in a transition phase between pediatric and adult care models, she said. This transition phase also often extends to young adults’ living situation and insurance coverage.
“All of these social risk factors can lead to increased fragmentation of their care, so in this study we wanted to examine and characterize the fragmentation of care among young adults with sickle cell disease and contrast this with younger and older patients to determine if there was a potential association between fragmentation and mortality in this population,” Mahajan said.
Mahajan and colleagues used patient discharge records in California between 1991 and 2016 to identify 6,977 patients with sickle cell disease. They separated patients into age-based cohorts, including children (aged 10-17 years; n = 1,019), young adults (aged 18-25 years; n = 1,122) and adults (aged 26-33 years; n = 1,015).
The young adult cohort was largely African American (91.3%), and most of the young adults (56.1%) were female. Forty-two percent had Public Medi-Cal insurance and 26.7% had private insurance.
Forty-four percent of patients in the young adult cohort had fewer than 10 inpatient hospitalizations; 20.1% had 10 to 19 inpatient hospitalizations; 11.1% had 20 to 29 inpatient hospitalizations; and 24.7% had 30 or more inpatient hospitalizations during young adulthood.
The investigators classified fragmentation of care by the number of unique facilities at which each patient received inpatient care during their time in each age group. Sickle cell disease specialty care centers were defined as those in the top 5% based on the number of unique patients with sickle cell disease treated at the center.
The investigators performed regression analyses to determine variables associated with health care fragmentation, and used multivariable Cox regression models to determine the impact of health care fragmentation on patient mortality.
The results showed that children with sickle cell disease were least likely to experience health care fragmentation, with nearly 60% having received all of their care at one facility between the ages of 10 and 17 years.
Young adults appeared most likely to experience fragmentation, with 78% receiving care for their disease at more than one facility between the ages of 18 and 25 years.
Young adults with private insurance appeared at lower risk for fragmentation (incident rate ratio [IRR] = 0.85; 95% CI, 0.78-0.93) in multivariable regression models, whereas those without insurance had a higher fragmentation risk (IRR = 1.45; 95% CI, 1.22-1.72). Young adults with more admissions (vs. < 10) had a higher risk for fragmentation, including those with 10 to 19 admissions (IRR = 1.42; 95% CI, 1.29-1.57), 20 to 29 admissions (IRR = 1.49; 95% CI, 1.33-1.67); and more than 30 admissions (IRR = 2.13; 95% CI, 1.98-2.43).
Fragmentation risk also appeared higher among young adults who were sometimes (IRR = 2.19; 95% CI, 1.98-2.43) or never (IRR = 1.15; 95% CI, 1.15-1.46) admitted to a sickle cell disease specialty care center compared with those who always received care at such centers.
“Although we initially thought that fragmentation might be associated with an increased risk in mortality, when we did a multivariate model to examine this, we found that it was really frequency of admissions — more than 10 in a 7-year time period — that was associated with the highest risk for mortality in the young adult age group,” Mahajan said.
Young adults with more frequent admissions were at increased risk for death regardless of location, according to results of the multivariable mortality model (HR for 10-19 admissions = 2.36; 95% CI, 1.13-4.91; HR for 20-29 admissions = 4.25; 95% CI, 2.03-8.92; HR for > 30 admissions = 7.79; 95% CI, 4.09-14.83).
Mahajan said the results suggest that fragmentation of care among patients with sickle cell disease begins in early adulthood and continues as patients age.
“The main point to take away from this study is examining what we can do as providers and health care systems to improve the comprehensive care that young adults likely need and are not receiving compared with children,” she said.
“As more therapeutic advances come down the pipeline for sickle cell disease, it becomes even more imperative that patients receive comprehensive care from providers with expertise in the field.” – by Drew Amorosi
Reference:
Shatola A, et al. Abstract 4667. Presented at: ASH Annual Meeting and Exposition; Dec. 7-10, 2019; Orlando.
Disclosures: Mahajan reports no relevant financial disclosures. Please see the abstract for all other authors’ relevant financial disclosures.
Perspective
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Cheryl Mensah, MD
Once pediatric patients reach adult age, they are in a period of transition. Young adults are transitioned to adult providers for continued management of their health conditions. Unfortunately, many patients with chronic illness lose contact with outpatient health care providers during transition resulting in fragmentation of care. This affects the quality of care they receive and often results in subsequent hospital admissions.
Luckily, in this study, fragmentation in care did not seem to affect mortality.
Although the results of this study are limited to one state, California is somewhat emblematic of the rest of the country. Many sickle cell patients across the country experience fragmentation of care during the transition period. However, California has more centers that specialize in treatment of sickle cell disease than most parts of the United States, so that is a significant limitation to consider when evaluating the results of this study. In fact, California lawmakers recently passed a bill to increase the number of sickle cell centers in the state.
If more providers who treat sickle cell disease had more social work support at their institutions, we would see a lot less fragmentation in care among young adults being treated for the disease. Many of the physicians who treat these patients lack the resources to follow up with their patients.
The results also show that those with lower socioeconomic statuses — who often have public insurance with less coverage — are among the most vulnerable to fragmentation in care. Having a social worker available in centers that serve these populations might help bridge this gap and reduce fragmentation.
This is significant piece of research that policymakers, hospital administrators and health systems should examine, as it deals with one of the many issues related to the transition of care between childhood and adulthood. I hope that policymakers will look at studies like this and make changes to help our patients.
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