In Australia, there are no standard tools used to routinely assess symptoms associated with cancer and cancer treatment in children 0-18 years, yet young people experience a significant number of symptoms. The associated distress can lead to poor treatment adherence, increased hospitalisation and compromised quality-of-life. Moreover, high symptom burden is associated with poor psychological outcomes including risk of Post-Traumatic Stress Disorder that may not emerge for years following treatment for childhood cancer.
This project is using a co-design process to develop a web-based app for remote symptom monitoring and delivery of tailored and personalised self-management advice for children and adolescents (8-18 years) with cancer. As part of this project, we validated an Australian translation of a 15 item Symptom Screening Tool in Paediatrics (SSPedi). This tool, developed in Canada, measures patient reported experience of distress from symptoms experienced during cancer treatment. Input was obtained from an Australian expert clinical group to modify SSPedi wording. Cognitive interviewing was completed with 10 children (9-16 years) using ‘think aloud’ techniques. Probing was used to evaluate understanding of individual items and of the response scale. We used a five point Likert scale (1=very hard to 5= very easy) to rate child’s ease with completing the SSPedi and a four point Likert scale (1= completely incorrect to 4=completely correct) to rate the child’s understanding of the scale.
Despite the tool being developed in English, there were a number of changes required for translation to Australian English. The mean difficulty for completing all items on the modified SSPedi was 3.9 (mean of individual item range 3.5 to 4.2). The items most difficult for children to complete were having problems thinking or remembering things (3.5), feeling disappointed or sad (3.6), and having tingly or numb hands and feet (3.6). Despite children reporting some difficulty with completing items, they were able to correctly understand items and the response scale (mean all items 3.8, mean of individual item range 3.2-4.3). Further validation work is underway to assess psychometric properties of the adapted tool for the Australian population. These are our first steps towards improving symptom control for children with cancer.