Key Information
As they shift from pediatric to adult care, young adults with sickle cell diseaseexternal link, opens in a new tab (SCD) appear to visit the emergency room more often and be prescribed less hydroxyureaexternal link, opens in a new tab, 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 opioidsexternal link, opens in a new tab — 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 Diseaseexternal link, opens in a new tab,” 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 symptomsexternal link, opens in a new tab such as anemia and painful sickle cell crises, including vaso-occlusive crisesexternal link, opens in a new tab.
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 complicationsexternal link, opens in a new tab 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.