Health-related quality of life in children with bronchopulmonary dysplasia: examining agreement between child self-report and parent proxy

Premature children with bronchopulmonary dysplasia (BPD) encounter several health issues potentially affecting their health-related quality of life (HRQL). We aimed to determine agreement between children with BPD and their parent's HRQL assessments. Using Patient-Reported Outcomes Measurement Information System (PROMIS) assessment tools, we evaluated agreement and potential bias between parent proxy and child self-reports of the PROMIS-Scale-Global Health-7, the Psychological Stress Experiences Short Form (PSE), and the PROMIS-Profile-25. Fifty-eight child-parent dyads from the Indoor Air Quality and Respiratory Morbidity in Children with BPD study were included. Intraclass correlations (ICC) between child self-report and parent proxy report showed moderate agreement for the Relationships domain (0.44 [95% confidence interval (CI) 0.38-0.53]) and poor agreement for the rest of the Profile-25 dimensions (Mobility, Anxiety, Depression, Pain, and Fatigue; range: 0.05-0.29), Global Health-7 (0.32 [95% CI 0.24-0.48), and PSE (0.34 [95% CI 0.27-0.49]) T-scores. Parents systematically overestimated negative HRQL domains (Pain, Anxiety, or Depression) and underestimated positive domains (Mobility or Relationship). As children age, the child-parent agreement worsens.Conclusions: In school-aged children with BPD, agreement between parents and children on HRQL scales is poor to moderate. Caregivers are biased towards lower HRQL. When possible, HRQL should be assessed in the patient directly. What is Known: center dot Children with chronic respiratory diseases often assess their own health related quality of life different than their caregiver would report for the child. center dot Recent data suggests that parent reported health related quality of life for children with BPD is similar to the normal population. What is New: center dot There is a consistent bias for parents to report worse health related quality of life on the Patient Reported Outcomes Measurement Information System (PROMIS) standardized assessment than their school-aged children with BPD.