Urgent needs and recommendations for patient-reported outcome measures (PROMs) in idiopathic pulmonary fibrosis/interstitial lung disease (ILD)
| Recommendations | |
| Choice of PROM | ILD-specific PROMs should be prioritised |
| The concept of interest in the PROM should meet the aim of the clinical trial | |
| PROMs should be selected according to the population of interest | |
| PROMs to measure impact of adverse effect/harm from drug interventions | |
| Measure patient experience of therapy burden | |
| Development based on IRT or Rasch measurement theory | |
| PROM validation | Language validation |
| Cultural validation | |
| Cross-sectional and longitudinal validation (MCID) | |
| MCID determination for improvement and deterioration | |
| Operability | PROMs should be simple and short |
| PROMs should be linguistically adapted to the population of interest | |
| PROM could utilise computerised adaptive testing | |
| Collection of data in real time | Use a device/device of patients’ choice |
| Use new technology, including audio and touch screen options |
IRT: item response theory; MCID: minimal clinically important difference.