Validation of Patient-Reported Outcome Measure in Pediatric CKD (PRO-Kid)

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Abstract
Key Points: PRO-Kid is a patient-reported outcome measure of the frequency and burden of symptoms. Higher PRO-Kid scores are associated with lower Pediatric Quality of Life Inventory scores. Background: Measuring the burden of symptoms that matter most to children and adolescents with CKD is essential for optimizing patient-centered care. We developed a novel CKD-specific patient-reported outcome measure (PRO-Kid) to assess both frequency and impact of symptoms in children. In this study, we further assessed the validity and internal consistency of PRO-Kid. Methods: In this multicenter study, children age 8–18 years with stages 3–5 CKD, including those on dialysis, were recruited from five pediatric centers. Children completed the 14-item PRO-Kid questionnaire and the validated Pediatric Quality of Life Inventory (PedsQL 4.0). We explored the dimensionality of the PRO-kid scale using exploratory and confirmatory factor analysis, to either establish that it is a unidimensional construct or identify evidence of subfactors. We then assessed internal consistency (Cronbach alpha) and construct validity (Pearson correlations). Results: In total, 100 children were included. The median eGFR was 27.4 ml/min per 1.73 m2 (7.43–63.4), and 26 children (26%) were on dialysis. Both the PRO-Kid frequency and the impact scales were unidimensional. Cronbach alpha was high for both the PRO-Kid frequency and impact scales, 0.83 (95% confidence interval [CI], 0.78 to 0.88) and 0.84 (95% CI, 0.80 to 0.89), respectively, showing strong internal consistency. Pearson correlations between PRO-Kid and PedsQL scores were also strong: −0.78 (95% CI, −0.85 to −0.70) for the frequency score and −0.69 (95% CI, −0.78 to −0.56) for the impact score, reflecting the association between poorer quality of life and higher symptom burden. Conclusions: PRO-Kid is a novel patient-reported symptom burden tool for children age 8–18 years with CKD that correlates strongly in the expected direction with PedsQL, supporting its validity. Future work will evaluate changes in PRO-Kid score with progression of CKD and implementation of the tool into clinical care.
Funding Information
  • Children's Hospital Research Institute of Manitoba
  • Canadian Institutes of Health Research

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