Improved long-term survival rates among children with cancer have drawn attention to the importance of assessing the quality of life in the years after treatment. The direct effects of cancer and of therapy-related toxicities may cause impairments in physical performance and in the ability to perform activities of daily living in adulthood. Ness and colleagues conducted an epidemiologic survey to examine the prevalence and severity of performance limitations and participation restrictions in a heterogeneous cohort of childhood cancer survivors.
The Childhood Cancer Survivor Study included 11,481 participants who were diagnosed with cancer before 21 years of age and received treatment at one of 26 institutions between 1970 and 1986. A comparison group consisted of 3,839 randomly selected siblings of cancer survivors. Data on the types of cancer and treatment modalities were collected from medical records. The most common diagnoses were leukemia (33.9 percent), Hodgkin’s and non-Hodgkin’s lymphoma (20.6 percent), and brain cancer (12.8 percent). More than six out of 10 patients were diagnosed before nine years of age.
Survivors were given a follow-up survey on long-term performance limitations and participation restrictions. The participants ranged in age from eight to 47 years, with an average age of 23 years at the time of the survey, and 88.8 percent had lived 10 or more years after diagnosis. For each of six questions, participants rated their physical performance on a scale of 1 to 3, with 1 being the most limited. An overall performance limitation was defined as having a total score at or below the 10th percentile of the sibling group. Participation restrictions were defined as health-related limitations in personal care skills (e.g., eating, bathing); routine activities (e.g., household chores, shopping); or ability to work or attend school.
In a matched analysis, cancer survivors were significantly more likely than the comparison group to report physical performance limitations (relative risk [RR] = 1.6) and restrictions in personal care skills (RR = 5.2), routine activities (RR = 4.0), and ability to attend work or school (RR = 5.2). Bone and brain cancers and combined radiation and chemotherapy most commonly were associated with limitations later in life; however, all survivors had an increased statistical risk regardless of diagnosis or treatment.
The authors conclude that adult survivors of childhood cancer have an overall increased risk of physical performance limitations and restrictions in their ability to perform activities of daily living. They suggest that this group would benefit from long-term monitoring for functional loss and from access to physical and occupational rehabilitation programs.