Modifying an Adult Version of a Cancer Symptom Inventory to Be Used with Children with Cancer

Childhood cancer is the second most common cause of death and the first cause of disease-related death among children in the United States. Each year, approximately 15,000 children and adolescents are diagnosed with cancer. Given that children with cancer experience multiple psychological and physical symptoms and functional impairments that are associated with cancer and its treatment, it is important that these symptoms and functional impairments be identified and measured. The primary aim of the present study was to develop a self-report measure that included multiple symptoms and functional impairments. This goal was achieved by modifying the adult version of an already existing measure (MD Anderson Symptom Inventory) to be used with children 8-12 years of age. The modification process was based on the results from interviews with experts, caregivers, and children to ensure that the modified measure was developmentally appropriate for children in the age range of 8-12. Upon completion of interviews and several revisions, the final version of the measure was used to explore the initial psychometrics of the modified measure.

This study demonstrated that the modified measure (MDASI-C) is age-appropriate and children as young as 8 years old can comprehend and respond to items on the measure. Including both symptoms and functional impairments when assessing patients’ responses is essential to our understanding of how cancer affects children. The MDASI-C (8-12) is a useful measure for evaluation of the severity and impairments associated with symptoms in a pediatric oncology population.