Sickle cell patients shifting to adult care visit ER more often: US study
They're also prescribed less hydroxyurea to help reduce painful crises
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As they shift from pediatric to adult care, young adults with sickle cell disease (SCD) appear to visit the emergency room more often and be prescribed less hydroxyurea, a preventive treatment approved to reduce the frequency of painful crises, according to a study in the U.S.
Data also showed that patients ages 26 to 33 years were prescribed a significantly higher number of opioids — strong analgesics used during painful crises — than those ages 16 to 20 years. This trend was particularly pronounced among young adults with moderate to severe symptoms of anxiety.
“This work can help to inform clinic practices around measuring and tracking transition by including such measures as a part of standard clinical workflow to assist in preparing AYA [adolescents and young adults] for transition,” researchers wrote.
The study, “The Role of Associated Treatment Factors and Mental Health on Transition From Pediatric to Adult Care for Adolescent/Young Adults With Sickle Cell Disease,” was published in the journal Pediatric Blood & Cancer by a team of researchers in the U.S.
Number of SCD patients increasing due to screening advances
In SCD, red blood cells become stiff and assume a sickle shape, leading to their premature destruction and an increased risk of becoming stuck in blood vessels. This can lead to symptoms such as anemia and painful sickle cell crises, including vaso-occlusive crises.
The number of people with this genetic disease is increasing due to advances in newborn screening, prevention, and treatment. This means more patients will eventually move from pediatric to adult care.
As with any disease, this transition can be challenging. When adolescents change doctors as they move to adult care, many stop regular visits and rely on emergency services instead. This can break the continuity of their treatment and increase the risk of serious complications and even death.
To investigate whether transitioning to adult care influences SCD treatment outcomes, the researchers analyzed data from 1,581 adolescents and young adults with SCD living in the U.S. Most were female (68%) and Black or African American (59.5%).
Participants were divided into three age groups: before the transition (16-20), during the transition (21-25), and after the transition (26-33). The team also examined whether mental health — specifically anxiety and depression — had any impact on this transition.
Oldest group had significantly higher number of opioid prescriptions
During the five years of observation, over one-third (37.4%) had at least one sickle cell crisis, and one-fifth (20.2%) developed acute chest syndrome, an SCD complication marked by pain and breathing difficulties and caused by red blood cells blocking small blood vessels.
In addition, 10.1% of patients experienced moderate to severe depression, and 5.2% experienced moderate to severe anxiety.
Statistical analyses adjusted for potential influencing factors (sex and race/ethnicity) showed that the oldest group had a significantly higher number of opioid prescriptions than the youngest group.
The two older groups, representing patients during and after the care transition, were less frequently prescribed hydroxyurea, a therapy used to lower the frequency of SCD complications. Consistent with this finding, these two groups had significantly more emergency room visits, suggesting greater reliance on emergency services.
“AYA with SCD aged 21-33 demonstrated utilizing emergency at higher rates, which can compromise the continuity of care when they are not connected and engaged with an [appropriate healthcare] provider,” the researchers wrote.
The two older groups were also more likely to experience moderate to severe symptoms of anxiety than the group of patients not yet transitioning to adult care.
[These findings suggest] a pattern of increased acute care use and decreased preventive treatment as patients with SCD transition to adult care. These higher rates can also be associated with increased disease burden, as people with SCD age, which requires greater intervention.
Further analyses showed that anxiety affected medication patterns differently by age. More severe anxiety was significantly linked to more opioid prescriptions and a less pronounced reduction in hydroxyurea prescriptions in patients ages 21-25. In contrast, more anxiety in those aged 26-33 was associated with an even lower number of hydroxyurea prescriptions.
Depression, but not anxiety, was linked to increased emergency use. Patients with more severe symptoms of depression were more likely than those with milder symptoms to visit the emergency room within 30 days (10% vs. 3%) and three months (15% vs. 7%). Depression more than doubled the risk of emergency visits over time.
Overall, these findings suggest “a pattern of increased acute care use and decreased preventive treatment as patients with SCD transition to adult care,” the team wrote. “These higher rates can also be associated with increased disease burden, as people with SCD age, which requires greater intervention.”
While coordinated transition programs could help young patients stay engaged in regular care for their SCD, “barriers persist, and there is a clear need to continue to examine and better understand patient experiences as they age out of adolescence,” the researchers concluded.
