Patterns of Loss to Follow-Up Care Among Childhood Cancer Survivors

Abstract

Purpose: Surveillance for long-term complications related to previous cancer therapy can help diagnose/ manage chronic health conditions in childhood cancer survivors and improve survivor quality of life. However, a challenge to delivering long-term care to childhood cancer survivors is loss to follow-up; many patients discontinue care at specialized survivor care centers. The purpose of this study was to examine patterns of loss to follow-up among a cohort of childhood cancer survivors. Methods: This retrospective study examined follow-up patterns among a nonrandom representative sample of 370 childhood cancer survivors among 1116 patients from a single institution. The median age of patients at diagnosis was 10.2 years (range <1-21). Factors potentially related to follow-up were utilized to evaluate patterns of follow-up across 5-year intervals following completion of active therapy. The association between patient characteristics and follow-up was evaluated using univariate and multivariate binomial regression models. Results: The probability of follow-up 1-5 years post-treatment was 91.2% (89.7%-92.5%) but dropped to 68.5% (66.2%-70.8%) during years 6-10, 47.7% (45.0%-50.3%) during years 11-15, and continued to steadily decrease over time. Overall, white race, diagnoses at younger ages, patients with lymphomas/leukemias, and decade of diagnosis were each associated with somewhat better rates of follow-up. Conclusions: These findings highlight the lack of follow-up by adult survivors of childhood cancer with only approximately one-half of patients returning for follow-up 10 years after completion of therapy. Interventions focused on educating both patients and primary care physicians may help to increase long-term follow-up care among this at-risk population.

Communication during childhood cancer: Systematic review of patient perspectives

“…3 Another Cochrane review of interventions for improving communication with children and adolescents regarding cancer found weak evidence supporting few interventions such as art therapy and computer-assisted learning. [87][88][89] Interventions may include enhancing clinician communication training with evidence-based recommendations (Table 3) and the perspectives of children and adolescents. [87][88][89] Interventions may include enhancing clinician communication training with evidence-based recommendations (Table 3) and the perspectives of children and adolescents.…”

Assessment of ovarian function in adolescents and young adults after childhood cancer treatment—How accurate are young adult/parent proxy‐reported outcomes?

“…Survivors who attend cancer survivor clinics are educated about their risk for specific late effects, receive recommended surveillance for detection of treatment‐related health conditions, and are referred to specialists if late effects are identified. However, some survivors may be followed in cancer survivor clinics as young children/adolescents but may not have access to survivor care as they age into adulthood . Other survivors often receive their healthcare from providers who may be less familiar with survivor care .…”

Pediatric acute lymphoblastic leukemia: Proportion of patients who continue hospital visits

“…Rokitka et al . investigated the visiting habits of 370 CCS who had been treated at their own facility, and reported that the ratio of follow‐up care declined over time, from 91.2% in post‐treatment years 1–5, to 68.5% in post‐treatment years 6–10, and then to 47.7% in post‐treatment years 11–15 …”