Prevalence and financial burden of WHO-defined disability among childhood cancer survivors: A report from the St. Jude Lifetime Cohort study (SJLIFE).

Abstract

12114 Background: Survivors of childhood cancer are at high risk for chronic health conditions that may result in disability. However, the prevalence and financial burden of disability, defined using the World Health Organization International Classification of Functioning, Disability and Health (WHO ICF), have not been described in this population. Methods: Disability-related items ascertained using clinical and patient-report data from SJLIFE were classified using standardized WHO ICF childhood cancer components, including impairments in body function or structure (strength, neurocognition, vision, hearing, speech, balance, neuropathy, ataxia, hemiparesis, tone, bowel and bladder, flexibility, gait, posture, pain, fatigue), activity limitations (motor function, communication, personal care), and participation restrictions (physical activity, education, independent living, employment, quality of life). Aggregate disability severity scores (ADSS) were calculated by summing item-level indicators (0 = none/mild; 1 = moderate, severe, or life-threatening disability) across 55 items spanning 3 components (38 body impairments, 5 activity limitations, and 12 participation restrictions). Disability was classified using either age- and sex-specific z-scores derived from 815 community controls (0 = ≥ −1.5; 1 = < −1.5) or NCI Common Terminology Criteria for Adverse Events (CTCAE) grades (0 = < 2; 1 = ≥ 2). Logistic regression evaluated associations between disability and financial burden (cancer-related financial impact), adjusting for sex, race, age at evaluation, and cancer treatment exposures (chemotherapy, cranial radiation, amputation). Results: Among 3,549 survivors (mean age at evaluation 33.6 years; range 18.0–68.9; 52.1% male; 80.7% White non-Hispanic), the most common diagnoses were acute lymphoblastic leukemia (31.9%), central nervous system tumors (14.5%), and Hodgkin lymphoma (10.5%). The point (most recent visit) prevalence (95% CI) of ≥1 item rated as moderate or greater disability was 87.4% (86.3–88.5). Component-specific prevalence was 74.6% (73.2–76.0) for body impairments, 32.9% (31.3–34.4) for activity limitations, and 63.3% (61.7–64.9) for participation restrictions; all were higher than controls (p < 0.001). Higher overall ADSS was associated with greater financial hardship (OR = 2.97; 95% CI 2.05–4.30) with similar associations across all components, including body impairments (OR = 2.67; 95% CI 2.09–3.41), activity limitations (OR = 2.28; 95% CI 1.91–2.72), and participation restrictions (OR = 2.61; 95% CI 2.13–3.21). Conclusions: WHO-defined disability is highly prevalent among adult survivors of childhood cancer and is strongly associated with financial burden. These findings highlight the need for integrated survivorship care that addresses both medical and socioeconomic risk factors.