Lost but not missing: Factors associated with loss of follow-up in a pediatric cardiology clinic

Background: Prior research has shown that loss of cardiology follow-up starts in early childhood, with almost half of patients lost to follow-up by age 13. However, risk factors for lack of follow-up are unclear. The purpose of this study was to determine variables associated with loss of appropriate pediatric cardiology follow-up, including potentially modifiable factors. We hypothesized that having earlier recommend follow-up times was associated with less likelihood of loss of follow-up.

Methods: We performed a retrospective cohort study of patients seen in a large, outpatient pediatric practice with over 20 locations in our state. The time period for initial encounters was from January 2013 to June 2016, with follow-up times from January 2013 to December 2019. Eligible initial encounters for this study were those in which a child was 5-17 years of age and had recommended follow-up time in our clinics of 1-3 years. Only the initial encounter was selected for patients who had more than one eligible encounter during the study period. The primary outcome of interest was loss of follow-up: subjects were considered to have loss of follow-up if they did not have a subsequent outpatient encounter by 6 months after their recommend follow-up time. In addition to recommended time of follow-up, additional variables obtained at time of the index appointment included disease severity, age, sex, race/ethnicity, insurance payor (public vs. private), clinic site, and provider (random effect). We performed multivariable logistic regression adjusted for these factors. We subsequently performed stratified analysis by severity of disease and age in a similar fashion.

Results: Of the 8940 eligible patients, 45.9% were lost to follow-up. Target follow-up of 1 year was associated with less loss of follow-up (41.4%) as compared to 2 years (51.6%) and 3 years (55.7%) (p<0.001 for both). Other significant predictors of loss of follow-up included less severe heart disease, older age, and non-Hispanic Black race/ethnicity (Table 1). Sex and payor type were not significant predictors. In the stratified analyses by severity of disease and age, longer recommended follow-up time was associated with greater loss of follow-up among all severity and age categories. (Figure 1)

Conclusions: Loss of follow-up is a significant problem in pediatric cardiology, with almost half of the patients in our cohort not receiving the recommended follow-up care. Some important factors may not be modifiable, such as severity of disease, age, and race/ethnicity. However, shorter follow-up time was associated with less loss of follow-up among all categories of disease severity and age. Recommending shorter follow-up intervals may be one initiative for pediatric cardiologists to improve rates of follow-up.