Kirsten K. Ness, PhD; Ann C. Mertens, PhD; Melissa M. Hudson, MD; Melanie M. Wall, PhD; Wendy M. Leisenring, PhD; Kevin C. Oeffinger, MD; Charles A. Sklar, MD; Leslie L. Robison, PhD; James G. Gurney, PhD
Grant Support: By grant CA 55727, National Cancer Institute, Bethesda, Maryland, with additional support provided to the University of Minnesota from the Children's Cancer Research Fund.
Potential Financial Conflicts of Interest: None disclosed.
Requests for Single Reprints: Kirsten K. Ness, PhD, Division of Epidemiology and Clinical Research, Department of Pediatrics, University of Minnesota, Mayo Mail Code 715, 420 Delaware Street SE, Minneapolis, MN 55455; e-mail, firstname.lastname@example.org.
Current Author Addresses: Drs. Ness and Mertens: Division of Epidemiology and Clinical Research, Department of Pediatrics, University of Minnesota, Mayo Mail Code 715, 420 Delaware Street SE, Minneapolis, MN 55455.
Dr. Hudson: Department of Hematology-Oncology, St. Jude Children's Research Hospital, 332 North Lauderdale, Memphis, TN 38105.
Dr. Wall: Division of Biostatistics, School of Public Health, University of Minnesota, Mayo Mail Code 303, 420 Delaware Street SE, Minneapolis, MN 55455.
Dr. Leisenring: Fred Hutchinson Cancer Research Center, 1100 Fairview Avenue North, D5-360, P.O. Box 19024, Seattle, WA 98109.
Drs. Oeffinger and Sklar: Department of Pediatrics, Memorial Sloan-Kettering Cancer Center, 1275 York Avenue, New York, NY 10021.
Dr. Robison: Cancer Center and Division of Epidemiology and Clinical Research, Department of Pediatrics, University of Minnesota, Mayo Mail Code 422, 420 Delaware Street SE, Minneapolis, MN 55455.
Dr. Gurney: Division of General Pediatrics, University of Michigan Medical School, 300 NIB 6E02, Box 0456, 300 North Ingalls Street, Ann Arbor, MI 48109.
Author Contributions: Conception and design: K.K. Ness, A.C. Mertens, K.C. Oeffinger, L.L. Robison, J.G. Gurney.
Analysis and interpretation of the data: K.K. Ness, M.M. Hudson, M.M. Wall, W.M. Leisenring, K.C. Oeffinger, L.L. Robison, J.G. Gurney.
Drafting of the article: K.K. Ness, A.C. Mertens, M.M. Hudson, W.M. Leisenring, K.C. Oeffinger, J.G. Gurney.
Critical revision of the article for important intellectual content: K.K. Ness, A.C. Mertens, M.M. Hudson, W.M. Leisenring, K.C. Oeffinger, C.A. Sklar, L.L. Robison, J.G. Gurney.
Final approval of the article: K.K. Ness, A.C. Mertens, M.M. Hudson, W.M. Leisenring, K.C. Oeffinger, C.A. Sklar, J.G. Gurney.
Provision of study materials or patients: A.C. Mertens.
Statistical expertise: K.K. Ness, A.C. Mertens, M.M. Wall, W.M. Leisenring, J.G. Gurney.
Obtaining of funding: L.L. Robison.
Administrative, technical, or logistic support: A.C. Mertens, J.G. Gurney.
Collection and assembly of data: A.C. Mertens, L.L. Robison.
Survivors of childhood cancer may experience important disease- and treatment-related late effects, including functional limitations.
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.
Epidemiologic survey and 26 institutions that treat childhood cancer.
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.
Medical data were abstracted, and participants or parents (if the participants were <18 years of age at survey completion) completed a 24-page questionnaire.
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%).
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.
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.
Long-term survivors of childhood cancer may be affected by treatment-associated impairments that limit physical performance and restrict participation in activities of daily living. Prevalence of these impairments and their association with particular types of cancer or treatment methods are not known.
Patients surviving childhood cancer for at least 5 years were compared with their siblings who did not have cancer. All survivors were at an increased relative risk for persistent impairment, but survivors of brain and bone cancer were particularly likely to report performance limitations and restrictions in routine activities.
Despite substantial improvements in treatment of childhood cancer, profound alterations in quality of life often persist into adulthood.
Status of survivors and participants registered with the Childhood Cancer Survivor Study as of July 2003.
Table 1. Characteristics of the Study Participants
Table 2. Performance Limitations and Participation Restrictions among Siblings and Survivors of Childhood Cancer, Overall and by Cancer Type
Table 3. Survivors of Childhood Cancer and Siblings with Medical Late Effects
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Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC, et al. Limitations on Physical Performance and Daily Activities among Long-Term Survivors of Childhood Cancer. Ann Intern Med. 2005;143:639–647. doi: 10.7326/0003-4819-143-9-200511010-00007
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Published: Ann Intern Med. 2005;143(9):639-647.
Cancer Survivorship, Hematology/Oncology.
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