OREGON HEALTH & SCIENCE UNIVERSITY
Chemotherapy, Pain, Sleep, Fatigue in Children and Parents Symptom management is a critical issue in both acute and chronic illness care. Studies with adults repeatedly demonstrate the deleterious effects of symptoms on health outcomes such as mood, physical function, family life, social roles and school/work roles. Despite extensive work on understanding the symptoms experience of adults with a variety of health problems, research on the symptom experience of children is scarce, follows a single symptom (e.g., pain), and is often cross-sectional. Children with acute lymphoblasticleukemia (ALL) are treated with a lengthy chemotherapy protocol that includes 6-8 months of intensive treatments, followed by 2 years or more of maintenance therapy. In a recent survey, pain and fatigue were the problems reported most frequently in children with leukemia. Sleep disturbance has been reported in a few studies. No studies, however, have described the pattern of change in these symptoms or examined the relationships among these symptoms with health outcomes in children across the course of chemotherapy. In addition, there are no studies of symptoms of parents who care for their children at home. This longitudinal study will be the first to describe in detail the patterns of pain, sleep, fatigue, and well-being of children with ALL and their parents across the course of chemotherapy using 3-day diaries, actigraphy, questionnaires, and medical record review. Within subjects design will examine change over time of 72 children (ages 8 to 18 years) with ALL and their parents at six clinically relevant points (once at induction, consolidation, interim maintenance, delayed intensification, and twice in maintenance). The congruence of patterns in pain, sleep disturbance, fatigue, and health outcomes between fathers and mothers, fathers and child, and mothers and child will also be explored. Results of this study will contribute to the development of comprehensive intervention protocols to benefit both the children with leukemia and their parents. The high survival rate of children with ALL could be even higher, and health outcomes increased with better understanding and management of these symptoms.