PC2093: Risk Factors for Loss to Follow-up in High-risk Neonatal Developmental Clinic

Background: Primary care pediatricians provide the medical-home for neonatal patients discharged from Neonatal Intensive Care Units (NICUs) who are at high-risk for developmental delays. These patients typically need additional developmental monitoring and services even if they are meeting developmental milestones. Referral to the high-risk developmental clinic is typically made prior to NICU discharge, but many patients are lost to follow-up. There are known disparities in follow-up rates by race, maternal smoking status, and distance from the hospital, but there are additional factors that may affect follow-up rates that have not been studied in this population.

Methods: Our objective was to determine how insurance type (public versus private), multi-specialty follow-up, and previous no-shows (missed clinic appointments without notifying ahead of time of cancellation) affected the likelihood of being lost to follow-up in this population. We developed a cohort list of all patients seen in the high-risk neonatal developmental follow-up clinic at a regional specialty hospital between January 1st, 2014 and December 31st, 2018. A randomly selected sample of 100 patients was used for preliminary analysis. We reviewed the electronic health records of these patients to collect information on variables of interest over a follow-up period of three years. Patients who either moved or were deceased at the end of the follow-up period, or who began their developmental follow-up at another institution, were excluded. “Lost to follow-up” was defined as not attending a follow-up visit that was recommended and not informing the clinic of a reason for discontinued follow-up. Multivariable logistic regression was used to model loss-to-follow-up rates.

Results: Of the 100 randomly-selected patients from our cohort, 61% were white, 18% were Black, 8% were Asian, and 4% were Hispanic. 40% were insured by private insurers and 60% were insured by primary or secondary Medicaid, during their initial admission. 38% required follow-up with three or more specialties upon NICU discharge. 16% had at least one no-show visit in the high-risk neonatal developmental follow-up clinic. Public insurance and follow-up with three or more specialties were associated with higher odds of loss to follow-up but were not statistically significant. The adjusted odds of being lost to follow-up were 4.8 times higher (95% CI = 1.1, 20.8) among those who had at least one no-show visit (p = 0.04).

Conclusion: Having a history of any no-show visits was associated with higher odds of eventually being lost to follow-up from the high-risk neonatal developmental follow-up clinic. Primary care pediatricians may wish to follow-up with families who do not show for developmental follow-up appointments to see if there are any barriers that social work services can help mitigate and to ensure these patients receive proper developmental evaluation and services.