Sickle Cell Youth Demonstrate Low Pediatric-to-Adult Care Transition Scores

A new study suggested that sickle cell juveniles are likely to have lower transition readiness than other patient populations.

“Transition is a process that aims to prepare adolescents and young adults (AYA) to live independently,” the researchers explained. “Transition includes the transfer of care to an adult caregiver and further includes aspects of an adult’s daily life after a caregiver change.”

However, patients with sickle cell disease have needs that pose unique challenges in the transition from pediatric to adult care, including blood transfusion requirements, iron chelation therapy, and socio-economic challenges.

As a result, “the incidence of SCD-related complications increases steadily during the transition period and continues to increase throughout adulthood.”

Led by Anjai Oberoi, of Tufts University School of Medicine, the research team conducted a retrospective one-center study to assess transition readiness in AYA patients with sickle cell disease. To do this, they used the skills-based, self-reported Transition Readiness Assessment Questionnaire (TRAQ).

Secondary outcomes included the associations between TRAQ scores and transition outcomes of emergency room dependence and emergency room use compared to the larger population of youth with special care needs (YSCHN).

All data represented electronic health records of patients treated in the pediatric hematology clinic between January 1, 2019 and March 1, 2020.

As such, 45 of 97 eligible patients aged 13-22 years (mean 17.1 years) completed the TRAQ. A majority were female (53.3%) and of the HbSS genotype (71%).

The mean TRAQ score was 3.67 – with mean emergency room use being 1.2 visits and the share of emergency room dependence being 10.6%.

“Mean TRAQ scores were higher in older age groups, female patients, and those with the HbSS genotype,” Oberai and colleagues wrote.

“Unpaired t-test and ANOVA analyzes found the difference in mean TRAQ score by gender, genotype, emergency room use, or emergency room dependence not statistically significant,” they continued. Nevertheless, they found statistical significance (P = .0004) in the mean TRAQ score by age.

Comparing these findings with the overall YSCHN population and healthy youth, they noted that healthy youth had the highest mean TRAQ scores (mean 3.93). In addition, healthy youths trained in specific domains, such as Keeping Appointments (average 4.07) and Managing Daily Activities (average 4.63).

YSHCN scored highest in Administering Medicines (mean 3.97) and patients with IBD had the highest scores for Talking to Health Care Providers (mean 4.86) and Tracking Health Problems (mean 3.56).

The team also noted that there were no significant associations between TRAQ scores and dependence and emergency room use – although they indicated that a similar study with a larger population may help elucidate possible notable associations for these patients.

“There are several possible explanations for our patients’ lower scores,” the researchers wrote. “Difficulties associated with adverse social health determinants are likely to hinder the ability to adhere to SCD treatment plans as adolescents transition into adulthood by limiting the extent to which adolescents can focus on SCD in the context of other challenges.”

They indicated that interventions, such as peer transition navigators or telecare practices, can be useful for this population.

The study, “Measuring Transition Readiness in Adolescents and Young Adults with Sickle Cell Disease using the Transition Readiness Assessment Questionnaire,” was published online in Authorea

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