Abstract

Abstract At Dana Farber Cancer Institute, children and young adults who have completed treatment for central nervous system tumors visit the Pediatric Neuro-Oncology Outcomes Clinic (“Empower”) for survivorship visits. By attending these long-term clinic visits, survivors can receive multidisciplinary services and undergo monitoring for disease recurrence. We used descriptive statistics and chi-square tests to investigate the relationship between loss to follow-up and sociodemographic factors among Empower patients. We reviewed medical records to gather data on 200 patients who had visited the clinic between 1-1-2015 and 1-1-2020, extracting information about sex, zip code, diagnosis, treatment received, and insurance type (private vs. public). We then indicated whether each patient had been “lost to follow-up,” defined as not returning to the clinic for >1,000 days after the recommended follow-up date. Among the 200 patients reviewed, 46 (23%) were lost to follow-up and 154 (77%) were not lost to follow-up. With respect to race and ethnicity, individuals identifying as Black, Asian, Middle Eastern, Native Hawaiian or Pacific Islander, Hispanic or Latino, or “Other” were more likely to be lost to follow-up than patients who exclusively identified as White (21% versus 39%; p=0.036). Additionally, individuals who were lost to follow-up were more likely to have been treated for low-grade gliomas as opposed to other CNS tumors (30% versus 13.6%; p=.015). Sex, the use of chemotherapy and radiation, and insurance type did not have a significant association with loss to follow-up. An analysis of the relationship between median household income and loss to follow-up is pending. The results imply that there is a significant association between non-white race, Hispanic or Latino ethnicity, a diagnosis of low-grade glioma, and loss to follow-up. The continuation of this study can provide the groundwork for interventions targeted at supporting patients who are at an increased risk of loss to follow-up.

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