Key Findings
- Purpose
To examine the prevalence of lapsed attendance (LA) among young children with sickle cell disease (SCD), identify factors statistically associated with gaps in SCD clinic attendance, and characterize caregiver-reported reasons for lapses in care. - Population (Model)
Retrospective chart review of children with SCD born between 2013 and 2017 who had been seen at Children’s Healthcare of Atlanta before age 1. The study assessed SCD clinic attendance through age 6. Of 492 children who met the initial eligibility criteria, 396 were included in the lapse analysis. Lapsed attendance was defined as an interval of more than 365 days between SCD clinic visits before the child’s sixth birthday. - Headline Result
160 of 396 analyzed children (40.4%) experienced at least one lapse in attendance. Among the 160 children who experienced a lapse, 34% had their last SCD clinic visit before age 1, while 57% had their last visit before age 2. LA was statistically associated with a non-SCA genotype, later initial clinic attendance, a prior no-show appointment, and—with relevant age and genotype subgroups—not receiving hydroxyurea by age 2 or transcranial Doppler (TCD) screening by age 3. LA was also associated with having no hospital admission during the final year of follow-up. These were observational associations; the retrospective study cannot establish that they caused lapses in attendance. - Why It Matters
Regular SCD follow-up can provide opportunities for disease education, preventive care, screening, treatment monitoring, and connection to supportive services. The study’s findings suggest that prolonged gaps in care may reduce opportunities for these activities, but the study did not directly measure the clinical consequences of each lapse.
- Evidence Gaps & Limitations
This was a retrospective study from a single pediatric SCD program, limiting generalizability to other populations and healthcare systems. The study identifies associations rather than causal relationships, and it did not test interventions to determine which strategies are effective in preventing prolonged gaps in SCD clinic attendance. Further research is needed to determine which approaches effectively prevent prolonged gaps in SCD clinic attendance.
Source: Journal of Sickle Cell Disease- “Lapses in clinic appointment attendance in young children with sickle cell disease”
Regulatory & Guideline Watch
The American Academy of Pediatrics’ 2024 clinical report recommends early referral of infants with SCD to a pediatric SCD center or hematologist for comprehensive-care co-management and at least annual consultation with a multidisciplinary SCD team. National Heart, Lung, and Blood Institute (NHLBI) and American Society of Hematology (ASH) guidance recommends annual transcranial Doppler (TCD) screening for children ages 2–16 years with HbSS or HbSβ⁰-thalassemia, with specialist evaluation and appropriate stroke-prevention management when results are abnormal. NHLBI guidance also recommends offering hydroxyurea to infants and children with HbSS or HbSβ⁰-thalassemia beginning at 9 months of age, regardless of clinical severity, with appropriate laboratory monitoring.