Background: Survivors of childhood cancer may experience important disease- and treatment-related late effects, including functional limitations.
Objective: This study evaluated performance limitations and restricted abilities to participate in personal care, to engage in routine activities like shopping or housework, and to attend work or school (participation restrictions) in a cohort of survivors of childhood cancer.
Setting: Epidemiologic survey and 26 institutions that treat childhood cancer.
Patients: Participants included 11 481 persons who were treated for primary brain cancer, leukemia, Hodgkin disease, non-Hodgkin lymphoma, kidney tumor, neuroblastoma, soft-tissue sarcoma, or malignant bone tumor before the age of 21 years and who survived at least 5 years after diagnosis. The comparison group included 3839 siblings of survivors of childhood cancer.
Measurement: Medical data were abstracted, and participants or parents (if the participants were <18 years of age at survey completion) completed a 24-page questionnaire.
Results: Compared with siblings, survivors were more likely to report performance limitations (risk ratio, 1.8 [95% CI, 1.7 to 2.0]) and to report restricted participation in personal care skills (risk ratio, 4.7 [CI, 3.0 to 7.2]), routine activities (risk ratio, 4.7 [CI, 3.6 to 6.2]), and the ability to attend work or school (risk ratio, 5.9 [CI, 4.5 to 7.6]). Survivors of brain (26.6%) and bone (36.9%) cancer were most likely to report performance limitations, restricted ability to do routine activities (20.9% and 8.5%, respectively), and restricted ability to attend work or school (20.0% and 11.2%, respectively). Survivors of brain cancer were also most likely to report restricted abilities to perform personal care (10.5%).
Limitations: There was the potential for participants to be healthier or more physically capable than nonparticipants or for persons to be more motivated to participate in this study if they had functional deficits. In addition, the nature of the questionnaire did not allow specific physical limitations to be measured.
Conclusion: Long-term survivors of childhood cancer are at increased risk for functional limitations in physical performance and in participation in activities needed for daily living.