Adaptation and evaluation of a child-friendly patient reported outcome measure for use in Australia |
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Authors: | Natalie K. Bradford Raymond J. Chan Rick Walker Anthony Herbert Christine Cashion Dian Tjondronegoro Patsy Yates |
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Affiliation: | 1. Queensland University of Technology, School of Nursing, Brisbane, Australia;2. Centre for Healthcare Transformation and Centre for Children’s Health Research, Brisbane, Australia;3. Queensland Children’s Hospital, Brisbane, Queensland, Australia;4. Princess Alexandra Hospital, Brisbane, Queensland, Australia;5. The University of Queensland, School of Medicine, Queensland, Australia;6. Southern Cross University, Queensland, Australia |
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Abstract: | BackgroundUse of Patient Reported Outcomes (PROs) to assess symptoms in children are not routinely used in clinical practice, yet children with complex conditions experience a significant number of symptoms.AimTo adapt and evaluate the Symptom Screening in Pediatrics Tool (SSPedi), a PRO measure developed in Canada for use with Australian children.MethodsSSPedi 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 with cancer (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.FindingsConstruct 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 as reported by children were different to those identified by parents. Although children and parents returned a similar mean total score (13.43 vs. 13.80), there was weak overall interrater reliability (ICC 0.37, 95% CI ?0.26 to 0.70, p = 0.12).ConclusionChildren 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. |
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Keywords: | Paediatrics Psychometrics Cancer Symptoms Patient-reported outcome measures |
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