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


Social determinants can play a large role in hindering patient readiness for adult care.

sickle cell

Anjai Oberoi

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

“Transition is a process aimed at preparing adolescents and young adults (AYA) to live independently,” the study investigators explained. “Transition includes transfer of care to an adult provider and further encompasses aspects of everyday adult living beyond the change of provider.”

However, patients with sickle cell disease have needs that present unique challenges to transitioning from pediatric to adult care, including blood transfusion requirements, iron-chelation therapy, and socioeconomic challenges.

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

Led by Anjai Oberoi, of Tufts University School of Medicine, the investigative team conducted a single-center, retrospective study to assess transition readiness among AYA patients with sickle cell disease. To do this, they utilized the skill-focused, self-reported Transition Readiness Assessment Questionnaire (TRAQ).

Secondary outcomes included the associations between TRAQ scores and transition outcomes of emergency department reliance and emergency department utilization compared with the larger Youth with Special Healthcare Needs (YSCHN) population.

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

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

The mean TRAQ score was 3.67—with the mean emergency department utilizations being 1.2 visits and proportion of emergency department reliance being 10.6%.

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

“Unpaired t-test and ANOVA analyses did not find the difference in mean TRAQ score by sex, genotype, emergency department utilizations, or emergency department reliance statistically significant,” they continued. Nonetheless, they did find statistical significance (P = .0004) in the mean TRAQ score by age.

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

YSHCN scored the highest in Managing Medications (mean, 3.97), and patients with IBD had the highest scores for Talking with Providers (mean, 4.86) and Tracking Health Issues (mean, 3.56).

The team also noted there were no significant associations between TRAQ scores and emergency department reliance and utilizations—although they indicated a similar study with a larger population can help further elucidate any potential noteworthy associations for these patients.

“There are several possible explanations for our patients’ lower scores,” the investigators wrote. “Difficulties related to adverse social determinants of health likely impede the ability to adhere to SCD treatment plans as adolescent transitions to adulthood by limiting the degree to which adolescents can focus on SCD in the setting of other challenges.”

They indicated that interventions, such as peer transition navigators or telehealth 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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