Abstract Objectives Children with sickle cell disease (SCD) should be seen at least annually by a hematologist for disease management, prophylaxis, and education. We examined lapses in SCD care and reasons for these lapses in children with SCD under age six. Methods We included children with SCD born between 2013 and 2017 seen at our institution before their first birthday, and reviewed SCD clinic attendance up to their sixth birthday. Patients were considered to have lapsed attendance (LA) if they went over 365 days without being seen in clinic. Demographic characteristics, healthcare utilization, and past treatment were compared for patients with and without LA. Medical charts were reviewed to determine reasons for LA. Results 492 children met our inclusion criteria and 396 were analyzed for LA. Just over 40% (n = 160) had an instance of LA; of those, 34% had their last clinic visit prior to LA before their first birthday. Lapsed attendance was associated with having a non-sickle cell anemia genotype, a later first clinic visit, having a no-show appointment, not starting hydroxyurea by age 2, not having a TCD by age 3, and not having a hospital admission in the last year of follow-up. The most common reasons for LA reported by caregivers were insurance issues, child not appearing ill, and transportation barriers. Conclusion Young children with SCD going over a year without being seen by hematology is an important issue in our population. Enhancements to caregiver education, patient resources, and clinic scheduling practices may help reduce LA.
Kalmus et al. (2026) studied this question.