Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Nov 20:90:103657.
doi: 10.1016/j.eclinm.2025.103657. eCollection 2025 Dec.

Symptom burden, healthcare utilization, and risky behaviors in survivors of the childhood cancer survivor study (CCSS): an observation cohort study

Rachel Webster  1   2 , Deo Kumar Srivastava  2   3 , Lu Xie  3 , Himani Darji  3 , Wei Liu  3   4 , Meghan E McGrady  5   6 , Tara M Brinkman  1   2   7 , Nicole M Alberts  8 , Kirsten K Ness  2   7 , Bernard Fuemmeler  9 , Alicia S Kunin-Batson  10 , I-Chan Huang  2   7 , Gregory T Armstrong  2   7 , Rebecca M Howell  11 , Daniel M Green  2   7 , Yutaka Yasui  2   7 , Kevin R Krull  1   2
Affiliations

Symptom burden, healthcare utilization, and risky behaviors in survivors of the childhood cancer survivor study (CCSS): an observation cohort study

Rachel Webster et al. EClinicalMedicine. .

Abstract

Background: Childhood cancer survivors face physical, psychological, and neurological symptoms that contribute to risky health behaviors and increased healthcare utilization. Traditional survivorship care models overlook risk associated with this symptom burden. The current study examined symptoms phenotypes to identify high-risk groups.

Methods: Five-year survivors (N = 17,231; Mean [standard deviation] age = 27.4 [5.98]; 80% non-Hispanic White; 48% female) from the Childhood Cancer Survivor Study (NCT01120353) self-reported symptoms and risky behavior at baseline and first follow-up (original cohort data collection: baseline 1994-1998 and follow-up 2002-2004; expansion cohort: baseline 2008-2010 and follow-up 2014-2016). Medical records were extracted through chart review. Chronic health conditions (CHCs) were graded according to common terminology criteria for adverse events criteria. Latent class analysis derived symptom phenotypes.

Findings: Five phenotypes emerged: 1) Low Burden (63.1%); 2) Cardio-Pulmonary-Pain (5.3%) 3); Neurologic-Pain (10.6%); 4) Psychological Distress-Pain (13.3%); 5) Global burden (7.7%). Compared to survivors with Low Burden, those in other symptom phenotypes were older, female, had lower education, no health insurance, smoked cigarettes, were physically inactive, and had ≥ grade 3 CHC (all ps < 0.05). Survivors in symptom phenotypes were at-risk for future emergency room use (all ps < 0.05). Risk for future physical inactivity was higher in Cardio-Pulmonary-Pain (OR = 1.19, CI = 1.09, 1.31), Global (OR = 1.12, CI = 1.02, 1.22), and Neurologic-Pain (OR = 1.18, CI = 1.10, 1.27) phenotypes. Cigarette use was higher in Cardio-Pulmonary-Pain (OR = 1.62, CI = 1.08, 2.42) and (Global OR = 1.65, CI = 1.17, 2.31) phenotypes.

Interpretation: Symptom phenotyping identified groups at-risk for future risky health behaviors, which was not explained alone by diagnosis or CHCs. Integrating symptom assessments may guide interventions to improve health outcomes.

Funding: The work was supported by the National Cancer Institute (U24 CA055727, PI: GT Armstrong). Support to St. Jude Children's Research Hospital was also provided by the National Cancer Institute Cancer Center Support grant (P30 CA021765, PI: CWM Roberts) and by the American Lebanese Syrian Associated Charities.

Keywords: Childhood cancer survivors; Healthcare utilization; Risky health behaviors; Symptom burden.

PubMed Disclaimer

Conflict of interest statement

DKS declares serving as a specialist grant reviewer for the Department of Defense (General Dynamics Information Technology); I–CH declares serving on the Research Advisory Board for Shriners Hospitals for Children; KRK declares serving on the Scientific Advisory Board for MD Anderson Cancer Center (Neuroscience Program); RMH declares NIH funding (R01CA261750; 3U24CA055727-29S1). All authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this article.

Figures

Fig. 1
Fig. 1
Latent classes of symptom burden across long-term survivors of the childhood cancer survivor study.
See this image and copyright information in PMC

References

    1. Huang I.C., Brinkman T.M., Kenzik K., et al. Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort study. J Clin Oncol. 2013;31(33):4242. - PMC - PubMed
    1. Bourke M., Wang H.F.W., McNaughton S.A., et al. Clusters of healthy lifestyle behaviours are associated with symptoms of depression, anxiety, and psychological distress: a systematic review and meta-analysis of observational studies. Clin Psychol Rev. 2025;118 doi: 10.1016/j.cpr.2025.102585. - DOI - PubMed
    1. Halloway S., Wagner M., Tangney C., et al. Profiles of lifestyle health behaviors and cognitive decline in older adults. Alzheimer's Dement. 2024;20(1):472–482. doi: 10.1002/alz.13459. - DOI - PMC - PubMed
    1. Nghiem V.T., Jin J., Mennemeyer S.T., Wong F.L. Health-related risk behaviors among U.S. childhood cancer survivors: a nationwide estimate. BMC Cancer. 2024;24(1):180. doi: 10.1186/s12885-024-11894-7. - DOI - PMC - PubMed
    1. Nathan P.C., Ford J.S., Henderson T.O., et al. Health behaviors, medical care, and interventions to promote healthy living in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2363. - PMC - PubMed