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

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.

Authors

Institutions

Publication Details

Journal
Journal of Clinical Oncology
Published
2026-05-27
DOI
https://doi.org/10.1200/jco.2026.44.16_suppl.12114
Primary Topic
Economic and Financial Impacts of Cancer
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Jessica Sparrow, Robert J. Ferguson, D Green, Lisa M. Jacola et al.
Journal of Clinical Oncology
Economic and Financial Impacts of Cancer
article

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

Jessica Sparrow, Robert J. Ferguson, D Green, Lisa M. Jacola, Jeanette Lavecchia, Joshua Burns, Tara M. Brinkman, Matthew J. Ehrhardt, Gregory T. Armstrong, Sedigheh Mirzaei, Melissa M. Hudson, Kirsten K. Ness, Kevin R. Krull, Angela Delaney, I-Chan Huang, Thomas Edward Merchant, Yan Chen, Kristin Szymanek, Johnnie Kramer Bass
article en

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.

Journal of Clinical OncologyVol. 44(16_suppl)
St. Jude Children's Research Hospital (US)
Openalex Percentile: Top 3%
Economic and Financial Impacts of Cancer
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.