Continuity and coordination of care for childhood cancer survivors with multiple chronic conditions: Results from the Childhood Cancer Survivor Study

Abstract

AbstractIntroductionContinuity and coordination‐of‐care for childhood cancer survivors with multiple chronic conditions are understudied but critical for appropriate follow‐up care.MethodsFrom April through June 2022, 800 Childhood Cancer Survivor Study participants with two or more chronic conditions (one or more severe/life‐threatening/disabling) were emailed the “Patient Perceived Continuity‐of‐Care from Multiple Clinicians” survey. The survey asked about survivors’ main (takes care of most health care) and coordinating (ensures follow‐up) provider, produced three care‐coordination summary scores (main provider, across multiple providers, patient–provider partnership), and included six discontinuity indicators (e.g., having to organize own care). Discontinuity (yes/no) was defined as poor care on one or more discontinuity item. Chi‐square tests assessed associations between discontinuity and sociodemographics. Modified Poisson regression models estimated prevalence ratios (PRs) for discontinuity risk associated with the specialty and number of years seeing the main and coordinating provider, and PRs associated with better scores on the three care‐coordination summary measures. Inverse probability weights adjusted for survey non‐participation.ResultsA total of 377 (47%) survivors responded (mean age 48 years, 68% female, 89% non‐Hispanic White, 78% privately insured, 74% ≥college graduate); 147/373 (39%) reported discontinuity. Younger survivors were more likely to report discontinuity (chi‐square p = .02). Seeing the main provider ≤3 years was associated with more prevalent discontinuity (PR; 95%CI) (1.17; 1.02‐1.34 vs ≥ 10 years). Cancer specialist main providers were associated with less prevalent discontinuity (0.81; 0.66–0.99 vs. primary care). Better scores on all three care‐coordination summary measures were associated with less prevalent discontinuity: main provider (0.73; 0.64–0.83), across multiple providers (0.81; 0.78–0.83), patient–provider partnership (0.85; 0.80–0.89).ConclusionsCare discontinuity among childhood cancer survivors is prevalent and requires intervention.