Characteristics of included publications
| Reference | PROM(s) | Subjects (n) | Patient population | Age (years) | Women (%) | Disease duration (years) | Language PROM used | Country where study performed | Setting |
| Birring et al. 2021 [23] | KBILD-B | 663 | Progressive fibrosing ILD (100%) | 65.2±9.7 | 46 | Not stated | Not stated | Argentina, Belgium, Canada, Chile, China, France, Germany, Italy, Japan, Republic Korea, Poland, Russian Federation, Spain, UK, USA | OPC |
| Chen et al. 2021 [26] | UCSD-SOBQ | 1933 | ILD (100%): 539 IPF 701 CTD-ILD 344 UC-ILD 151 HP 198 other ILD | 62±13 | 45 | Not stated | English/French | Canada | OPC |
| Kim et al. 2021 [27] | MRC UCSD-SOBQ | 238 | IPF (100%) | 72.6±7.6 (n=231) | 28.2 | 3.19 (2.8) (n=194) | English | UK | OPC/home |
| Prior et al. 2019 [24]# | KBILD-B | 150 | IPF (100%) | 72.9±6.2 | 18.7 | 0.5 (range 0–9.3) | Danish | Denmark | OPC |
| Prior et al. 2020 [42]# | KBILD-B UCSD-SOBQ | 150 | IPF (100%) | 72.9±6.2 | 18.7 | 0.5 (IQR 0–21) | Danish | Denmark | OPC |
| Silva et al. 2021 [28] | UCSD-SOBQ MRC | 30 | ILD (100%): 18 IPF 5 CTD-PF 4 particle-induced PF 3 NSIP | 59±10 | 50 | Not stated | Brazilian, Portuguese version UCSD | Brazil | OPC |
| Topcu et al. 2021 [36] | VAS-D MRC | 39 | ILD (100%): 14 RA-ILD 25 CTD-ILD | 60±7 53.6±10 | 71 92 | 10 (IQR 10) 9.7 (IQR 10) | Not stated | Turkey | OPC |
| Wapenaar et al. 2017 [25] | KBILD-B | 176 | ILD 100% 108 IPF 68 other ILD | 66.8±9.6 | 39.2 | Not stated | Dutch, French, Italian, Swedish | France, The Netherlands, Italy, Sweden | OPC/home |
| Swigris et al. 2010 [19] | D12 UCSD-SOBQ | 48 | 100% CTD-ILD | 52.8±19.7 | 74 | Not stated | English | USA | OPC |
| Yorke and Armstrong 2014 [21]¶ | D12 | 176 | PAH: 86 IPAH 49 CH-PAH 41 CTD-PAH | 54.3±14.4 | 70.5 | Not stated | English | UK, Ireland | OPC/home |
| Yorke and Armstrong 2014 [21]¶ | D12 | 25 | PAH | Not stated | Not stated | Not stated | Not stated | UK, Ireland | OPC/home |
| Yorke et al. 2011 [20] | D12 MRC | 101 | ILD (100%) | 67±10.9 | 70 | Not stated | Not stated | England | OPC |
| Bacci et al. 2018 [22] | ERS-IPF-B | 168 | IPF (100%) | 67.8±6.62 | 23.8 | <5 years | Not stated | Australia, Canada, Israel, Peru, South Korea, USA | OPC |
| Hinchcliff et al. 2011 [30] | FACIT-DS MRC | 73 | SSc (100%) | 51 (range 22–72) | 84 | 7 (range 0–45) | Not stated | USA | OPC |
| Hinchcliff et al. 2015 [39] | FACIT-DS | 100 | SSc (100%) | 52 (range 27–71) | 90 | 5 (range 0–35) (from onset Raynaud) | Not stated | USA (Chicago) | OPC |
| Nolan et al. 2019 [40] | KBILD-B | 209 | ILD (100%) | 70±10 | 39 | Not stated | English | UK | OPC rehabilitation programme |
| Patel et al. 2012 [18] | KBILD-B | 173 | ILD (100%) | 60±13 | 60 | Not stated | English | UK | OPC |
| Khadawardi et al. 2017 [43] | MRC | 115 | ILD (100%): 50 IPF 65 non-IPF-ILD | 70±10 65±13 | 56 | Maximum 5 years | Not stated | Canada | OPC |
| Baddini et al. 2002 [31] | NS OCD MRC | 30 | IPF (100%) | 59±2 | 40 | Not stated | Not stated | Brazil | OPC |
| Tzanakis et al. 2005 [32] | OCD MRC | 25 | IPF (100%) | 66±11 | 16 | 2.6 (1.7) | Not stated | Greece | OPC |
| De Jesús-Berrios et al. 2015 [33] | OCD MRC | 66 | ILD (17%) | 52 (range 25–70) | 54 | Not stated | Spanish | Puerto Rico | OPC |
| Yount et al. 2016 [29] | PROMIS-DS | 220 | IPF (100%) | 61±5.6 | 29.6 | Not stated | Not stated | USA | Home/online survey |
| Chung et al. 2013 [38] | UCSD-SOBQ VAS-D | 179 | SSc (100%): 53 SSc-PH 126 SSc | 56±11 | 87 | 10 (11) | Not stated | USA | Not reported |
| Swigris et al. 2012 [37] | UCSD-SOBQ | 180 | IPF (100%) | 69±9 | 17 | 2 (1.9) | Not stated | USA, Canada | OPC |
| Yates et al. 2018 [41] | VAS-D KBILD-B | 64 | ILD (100%) | 66±14 | 41 | Not stated | English | UK | Not reported |
| Manali et al. 2010 [34] | MRC | 25 | IPF (100%) | 68±8.3 | 68 | Not stated | Not stated | Greece | OPC |
| Mahler et al. 1988 [35] | MRC OCD | 153 | ILD (15%) | 57±15 | 36 | Not stated | Not stated | USA | OPC |
Age presented as years (mean±sd) unless otherwise stated. PROM: patient-reported outcome measure; KBILD-B; King's Brief Interstitial Lung Disease Health Status Questionnaire breathlessness and activities subscale; ILD: interstitial lung disease; OPC: outpatient clinic; UCSD-SOBQ; University of California San Diego Shortness of Breath Questionnaire; IPF: idiopathic pulmonary disease; CTD: connective tissue disease; UC: unclassifiable; HP: hypersensitivity pneumonitis; MRC: Medical Research Council dyspnoea scale; PF: pulmonary fibrosis; NSIP: nonspecific interstitial pneumonia; VAS-D: visual analogue scale-dyspnoea; RA: rheumatoid arthritis; PAH: pulmonary arterial hypertension; CH: congenital heart disease; D12: Dyspnea 12 Questionnaire; ERS-IPF-B: EXACT-Respiratory Symptoms Idiopathic Pulmonary Hypertension breathlessness subscale; FACIT-DS; Functional Assessment of Chronic Illness Therapy-Dyspnea short form; IPAH: idiopathic pulmonary hypertension; SSc: systemic sclerosis; NS: New Dyspnea Scale; OCD: oxygen cost diagram; PROMIS-DS: Patient-Reported Outcomes Measurement Information System-Dyspnea Severity short form. #: same patient population, different measurement properties evaluated; ¶: test–retest cohort evaluated in 25 different PAH patients.