Development of the quality of teen trauma acute care patient and parent-reported experience measure.
Matthew YeungBrent E HagelNiklas BobrovitzThomas H StelfoxNatalie L YancharPublished in: BMC research notes (2022)
Forty adolescent patients and 40 parents participated. Test-retest reliability was assessed using Cohen's kappa, weighted kappa, and percent agreement between responses. Directionality of changed responses was noted. Most of the study ran during the COVID-19 pandemic. We established good reliability of questions related to in-hospital and post-discharge communication, clinical and ancillary care and family accommodation. We identified poorer reliability among constructs reflecting experiences that varied from the norm during the pandemic, which included "maintenance of social networks", "education supports", "scheduling clinical follow-ups" and "post-discharge supports". Parents, but not patients, demonstrated more directionality of change of responses by responding with more negative in-hospital and more positive post-discharge experiences over time between the test and retest periods, suggesting risk of recall bias. Situational factors due to the COVID-19 pandemic and potential risks of recall bias may have limited the reliability of some parts of the survey.