Comparison of Patient-Reported Outcome Measures for Use as Performance Metrics in Adolescent and Young Adult Psychosocial Cancer Care

Purpose: To compare the Cancer Distress Scales for Adolescents and Young Adults (CDS-AYA)-Emotional and Impact scales-with the Edmonton Symptom Assessment Scale-revised (ESAS-r), Hospital Anxiety and Depression Scale (HADS), and the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT) for use as a patient-reported outcome-performance measure (PRO-PM) for AYA cancer care. Methods: Data were collected as part of the field test study of CDS-AYA. Assessment criteria were based on a National Quality Forum report. Internal and test-retest (TRT) reliability was assessed using Cronbach's alpha and intraclass correlation coefficients, respectively. A content sort of items in each scale was performed to determine AYA-specific content. Two predefined hypotheses for gender and treatment status were assessed using t-test. Results: Four hundred twenty-one participants were included in the analyses. Cronbach's alpha ranged from 0.79 to 0.94, with only the two scales of CDS-AYA achieving >0.90. TRT reliability for HADS was considered excellent (>0.90), with remaining scales having moderate to good reliability (>0.70). Only the Impact scale of CDS-AYA had items that addressed the specific concerns of AYAs (e.g., romantic relationships). In all scales, active therapy patients had higher levels of distress than patients not receiving treatment (p ≤ 0.05). Distress was greater for females than males for all scales, but nonsignificant for both the ESAS-r (p = 0.07) and the HADS depression subscale (p = 0.13). The proportion of AYAs screening positive for distress varied by instrument. Conclusion: The Impact scale of CDS-AYA met the most criteria for selection of a PROM for use in performance measurement for the AYA cancer population.