Health‐related quality scores in childhood interstitial lung disease: Good agreement between patient and caregiver reports

Introduction Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health‐related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences between patient‐reported (self) and caregiver‐reported (proxy) HrQoL scores. Methods This study used data obtained from the chILD‐EU Register. After inclusion (baseline), the patient's health status was followed up at predefined study visits. At each study visit, caregivers and patients were handed validated, age‐specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self‐ and proxy‐reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow‐up visit. Results No differences between patient‐ and caregiver‐reported HrQoL scores were found for school functioning, chILD‐specific questionnaire score, and physical health summary score. Self‐reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; p < .001), social functioning (81.9 vs. 76.2; p < .001), as well as psycho‐social summary score (76.5 vs. 71.8; p < .001) and total score (74.7 vs. 70.8; <.001). The longitudinal analysis showed that a significant change in a patient‐reported HrQoL score resulted in a significant change in a caregiver‐reported HrQoL score after a mean time of 11.0 months (SD 9.4). Conclusions We found a good agreement between children‐ and caregiver‐related HrQoL scores. In chILD, caregivers are able to sense changes in children's HrQoL scores over time and may be used as a proxy for children unable to complete HrQoL questionnaires.