Late Effects of Childhood Cancer, Participation, and Quality of Life of Adolescents

Abstract

This study investigated the late effects of childhood cancer on participation and quality of life. Ninety-two percent of survivors (9 to 18 years of age) reported living with late effects of lower extremity pain and numbness, memory and attention deficits, and fatigue, depression, or both. Semistructured interviews with 25 survivors using the Canadian Occupational Performance Measure and the Adolescent Activity Card Sort captured frequencies, interests, and barriers for a range of activities. Survivors reported diminished engagement in vigorous leisure activities, chores, and community activities. Lower engagement in social activities was correlated with lower quality of life scores, as measured by the Pediatric Cancer Quality of Life Inventory-32. Despite these findings of significant cognitive and physical problems, none of the 25 survivors had individualized education programs in school, nor were any receiving occupational therapy at the time the survey was completed. The findings emphasize the importance of advocacy for occupational therapy services for survivors of childhood cancer and examination of adolescent survivor participation in, and goals for, typical activities.