Quality of Life and Pain Experienced by Children and Adolescents With Cancer at Home Following Discharge From the Hospital

An exploratory study was conducted to examine the quality of life and pain experienced by patients with pediatric cancer at home after discharge. Physical, cognitive, social, and emotional aspects of quality of life were measured and how these may be affected by age, sex, diagnosis, and pain status. The authors also characterized intensity, location, and quality of pain experienced. A sample of 33 patients participating in a larger study was selected on the basis of having pain on the day of discharge and having completed the Pediatric Quality of Life Inventory Generic, Cancer Module, Multidimensional Fatigue Scale, and the Adolescent Pediatric Pain Tool at home. Cancer diagnoses were leukemias/lymphomas (42.4%), brain/central nervous system tumors (27.3%), sarcomas (24.2%), or other (6.1%). More than half of patients reported pain (n = 17; 51.5%). Patients with pain had more fatigue affecting the quality of life (P = 0.01), and lower physical and emotional functioning, leading to lower overall health-related quality of life scores (P = 0.011). Female individuals and adolescents reported worse emotional functioning (P = 0.02 and P = 0.05, respectively). Physical, cognitive, and social functioning were lowest among patients diagnosed with sarcomas (P = 0.00, P = 0.01, and P = 0.04, respectively). It is important to understand the symptom experience of patients at home as a first step in moving towards optimal discharge teaching and treatment.