Symptoms in Children/Young People With Progressive Malignant Disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum Survey

Abstract

AIM. The purpose of this study was to survey symptoms in children/young people with progressive cancer and identify which are the most important and which are the most difficult to treat effectively. PATIENTS AND METHODS. This was a questionnaire survey of 22 United Kingdom Children's Cancer Study Group centers. Data were collected by clinical nurse specialists in pediatric oncology regarding children/young people between 0 and 20 years of age, using 2 questionnaires. The first collected demographic details and the second data about the occurrence and perceived impact of symptoms. RESULTS. There were 185 children/young people from 20 centers registered in the study, aged 4 months to 19 years (mean: 8.7 years), who received palliative care for a median of 34 days (range: 0–354 days). Data were analyzed for 164 children/young people who died during the study. Between referral to palliative care and death, there were significant increases in the number of symptoms reported and children/young people experiencing pain (70.6% vs 91.5%). Symptoms included some that often go unrecognized in children/young people, for example, anorexia, weight loss, and weakness. The nature of the underlying malignancy significantly influenced the prevalence of some symptoms. There were significant differences between the symptoms associated with central nervous system tumors and other groups. Pain other than headache occurred more commonly in children with solid tumors (98.4%) than in others (87%). Neurologic symptoms, including headache, were universal among those with central nervous system tumors. CONCLUSION. This study documents the frequency of symptoms and contrasts the experiences of children/young people with different groups of malignant disease. With access to skilled symptom control, pain can be effectively treated in most children/young people. Some other symptoms often remain intractable. The study highlights the need for further research to establish the effectiveness of therapeutic interventions for symptom control and their impact on the quality of life for children/young people dying from cancer.