The Complexity of Symptoms and Problems Experienced in Children with Cancer: A Review of the Literature

To adequately help children with cancer, care providers need to understand the complexity of symptoms and problems associated with the illness that children are experiencing, which can enable them to better tailor patient care individually to each child. In this integrative literature review, we identified the types of symptoms and problems that children with cancer can experience during treatment and rehabilitation, the terms/expressions they use to describe their symptoms and problems, how children's symptoms and problems vary during the course of their illness, and how they vary and co-vary with age, gender or race. Of the 1175 titles identified, 110 articles met the inclusion criteria and were included in the review. Seventy eight were research-based. A total of 219 distinct symptoms or problems were identified in the literature either as the main problem or a symptom of the main problem. There is significant evidence that children and adolescents experience numerous and complex symptoms, and problems during and after treatment for cancer. Children use many different expressions to talk about their symptom experiences. However, few articles looked at how children's symptoms and problems varied during the course of their illness or the variations in symptom severity and degree of bother, or examined the relationship between children's, symptom experience and age, gender, or race. Most instruments that were used to measure symptoms were interviewer administred questionnaires, often adaptations from adult versions, and in younger children, symptoms were often obtained from adult informants. The insights gained form this review can be helpful to researchers and clinicians who wish to better understand how symptoms and problems are experienced from the children's own prerspective. However, more research is needed; to better understand differences in symptom experiences among different age groups; to identify differences among children from distinct cultural, ethnic, or socio-economic backgrounds; to clarify how symptoms and problems interfere with daily life; and to refine assessment methods that allow even younger children to communicate their symptom experiences in an age-adjusted manner. J Pain Symptom Manage 2009;37;403-418. (C) 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.