TABLE 1

Summary of patient-reported outcome measure (PROM) questionnaires and concepts captured

Content validityPsychometric propertiesItemsRecall periodResponse scaleSoB on exertionCoughFatiguePhysical functioningADLEmotional wellbeing
K-BILD [17, 18]Input from patients with ILD (including IPF)Cross-sectional and longitudinal measurement properties established in patients with IPF152 weeks7-point Likert scaleF: 3 itemsINF: 1 itemINF: 1 item
SGRQ-I [18, 19]Target: IPF
Rasch analysis using HRQoL data from RCT
Cross-sectional and/or without longitudinal measurement properties established in patients with IPF34Current/3 months/6 months/12 months3–5-point Likert scaleS: 1 item; INC: 4 itemsS: 2 items; INC: 1 itemINC: 1 itemS: 8 items; INC: 1 item; INF: 2 itemsINC: 5 items;
INF: 3 items
L-IPF [20]Input from patients with IPFCross-sectional measurement properties established patients with IPF3524 h (symptoms)
1 week (impacts)
0–4 NRS formatS: 7 items; INC: 1 item;
INF: 3 items
F: 3 items;
S: 2 items; INF: 1 item
S: 3 items; INF: 1 itemS: 6 items;
INF: 1 item
S: 5 items;
INF: 2 items
L-PF [16]Input from patients with PF-ILDNot available4424 h (symptoms)
1 week (impacts)
0–4 NRS formatS: 12 items;
F: 1 item; INF: 3 items;
INC: 1 item
F: 5 items;
S: 2 items;
INC: 1 item
S: 3 items;
INF: 1 item
S: 8 items
INF: 1 item
S: 7 items;
INF: 3 items
CASA-Q [21, 22]Input from patients with chronic bronchitisCross-sectional and longitudinal measurement properties established in patients with COPD and chronic bronchitis201 week5-point Likert scaleF: 2 itemsS: 1 item;
F: 2 items
F: 1 itemINF: 2 itemsINF: 4 items
LCQ [23]Input from patients with chronic coughCross-sectional and longitudinal measurement properties established in patients with chronic cough or COPD192 weeks7-point
Likert scale
S: 1 item; F: 1 itemF: 2 itemsINF: 2 items
E-RS (COPD+IPF) [24, 25]Input from patients with COPDCross-sectional and longitudinal measurement properties established in patients with COPD1124 h5-point
Likert scale
S: 5 itemsF: 1 itemS: 1 itemINF: 1 itemINF: 2 items
Input from patients with IPFCross-sectional and longitudinal measurement properties established in patients with IPF
FACIT-Dyspnoea [26]Input from patients with dyspnoeaCross-sectional measurement properties established in patients with dyspnoeaItem bank: 33; short form: 101 week4-point Likert scaleS: 34 itemsINF: 12 itemsINF: 18 items
FACIT-Fatigue [27]Input from patients with anaemic cancerCross-sectional measurement properties established in a mixed cancer patient population401 week5-point Likert scaleS: 7 items
INF: 1 item
INF: 3 items
S: 2 items
INF: 1 item

SoB: shortness of breath; ADL: activity of daily living; K-BILD: King’s Brief Interstitial Lung Disease; SGRQ-I: idiopathic pulmonary fibrosis (IPF)-specific version of St George's Respiratory Questionnaire; L-IPF: Living with Idiopathic Pulmonary Fibrosis; L-PF: Living with Pulmonary Fibrosis; CASA-Q: Cough and Sputum Assessment Questionnaire; LCQ: Leicester Cough Questionnaire; E-RS: Evaluating Respiratory Symptoms; FACIT: Functional Assessment of Chronic Illness Therapy; ILD: interstitial lung disease; F: frequency; INF: interference; HRQoL: health-related quality of life; RCT: randomised controlled trial; PF-ILD: progressive fibrosing interstitial lung disease; S: severity; INC: incidence; NRS: numeric rating scale.