Adaptation and evaluation of the symptom screening in pediatrics tool for use in Australia : A child friendly patient reported outcome measure

Background/Objectives : Routine use of Patient Reported Outcome Measures (PROMs) to assess symptoms in childhood cancer is not common, yet children experience a significant number of symptoms.Our aims were to adapt and evaluate the Symptom Screening in Pediatrics Tool (SSPedi), a PROM developed in Canada for use with Australian children.Design/Methods : SSPedi wording was adapted and item relevance assessed by an expert clinical group (N=7) resulting in the Australian version (SSPedi‐Aus). Cognitive interviewing with children (N=10, 8‐18 years) established understanding and difficulty with completing. A second group of child‐parent dyads (N=30) were recruited to evaluate psychometric properties (content validity, test‐retest reliability, and parent‐proxy) measured with Intraclass Correlation Coefficients (ICC) with 95% Confidence Intervals (CI). Acceptability and usefulness of SSPedi‐Aus were also assessed.Results : Results Children reported some difficulty with completing SSPedi‐Aus, however correctly understood items and the scale. Construct validity was confirmed across all items by 30 children. Child test‐retest achieved excellent concordance (ICC 0.98, 95% CI 0.91 to 0.99). Symptoms causing the most distress were related to fatigue (30%), changes in taste (30%) and appetite (20%). Although parents also identified fatigue (27%), they did not identify changes in taste or appetite. Children and parents returned a similar mean total score (13.43 vs. 13.80) with a weak overall interrater reliability (ICC 0.37, 95% CI ‐0.26 to 0.70, p=0.12). Free text responses were positive: “Answering questions about my symptoms makes me feel more secure about how I will be treated in the future.” (Male patient) and “It's a good idea to have some structure to help children communicate about their symptoms” (Parent)Conclusions : Conclusion Children are distressed by symptoms that may not be identified by parents or reported to clinicians, yet these symptoms are amendable to intervention. The SSPedi‐Aus is useful to assess the level of distress caused by symptoms in children