Urgent needs and recommendations for patient-reported outcome measures (PROMs) in idiopathic pulmonary fibrosis/interstitial lung disease (ILD)

Choice of PROMILD-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 validationLanguage validation
Cultural validation
Cross-sectional and longitudinal validation (MCID)
MCID determination for improvement and deterioration
OperabilityPROMs 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 timeUse a device/device of patients’ choice
Use new technology, including audio and touch screen options

IRT: item response theory; MCID: minimal clinically important difference.