Development of the quality of teen trauma acute care patient and parent-reported experience measure

OBJECTIVE: Patient-Reported Experience Measures (PREMs) provide valuable patient feedback on quality of care and have been associated with clinical outcomes. We aimed to test the reliability of a modified adult trauma care PREM instrument delivered to adolescents admitted to hospital for traumatic injuries, and their parents. Modifications included addition of questions reflecting teen-focused constructs on education supports, social network maintenance and family accommodation. RESULTS: 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13104-022-06194-x.