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Disability in Adult Survivors of Childhood Cancer: A Swedish National Cohort Study

Anders Hjern, Frank Lindblad, Krister K. Boman

From the Centre for Epidemiology, National Board of Health and Welfare; Department of Women's and Children's Health, Uppsala University Hospital; Karolinska Institutet, Department of Public Health Sciences; National Institute for Psychosocial Medicine; Karolinska Institutet, Department of Woman and Child Health, Childhood Cancer Research Unit, Stockholm, Sweden

Address reprint requests to Krister K. Boman, Karolinska Institutet, Childhood Cancer Research Unit, Astrid Lindgren Children's Hospital Q6:05, 171 76 Stockholm, Sweden; e-mail: Krister.Boman{at}ki.se

Purpose: We studied the effects of childhood or adolescent cancer and cancer treatment on disability as indicated by persistent aid needs in adult life.

Patients and Methods: A group of 2,503 survivors of childhood cancer diagnosed before their 16th birthday were studied with data from registers in a national cohort of 1.91 million Swedish residents. Disability indicators were created from information in national registers about income (sickness pension, handicap allowance), personal assistance, and family situation in 2002. Multivariate logistic regression on the log scale was used to estimate relative risk (RR) ratios.

Results: A total of 7.6% of survivors received handicap allowance indicating permanent disability, including brain tumors (14.0%), other solid tumors (6.3), and leukemias/lymphomas (2.9%), compared with 0.6% in the general population. Twenty-six percent of survivors of CNS tumor and 10% of survivors of solid tumors had at least one indication of a disability. Younger age at diagnosis suggested a higher risk for disability. CNS tumor survivors had an RR of 10.7 (95% CI, 9.3 to 12.8) for having at least one disability indication compared with the noncancer population, whereas leukemia and lymphoma survivors had an RR of 3.0, and survivors of other cancers had an RR of 3.8. Survivors of CNS tumor only had an increased RR for living in the parental household (RR = 1.6; 95% CI, 1.4 to 1.9).

Conclusion: Childhood cancer survivors more often have persistent needs of supportive measures provided by community and/or the parental household. The survivors of CNS tumors were at particular risk, indicating a need of safer treatment protocols, and tailored follow-up, prevention, and rehabilitation to address this persistent social disability.

Supported by Children's Cancer Foundation of Sweden, Swedish National Association for Cancer Sufferers and Traffic Accident Victims, and Karolinska Institutet/Stockholm County Council research grants (ALF-funding).

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.