Summary of the most widely used disease-specific patient-reported outcome measures (PROs) in IPF
| PRO | Description | Number of items | Domains assessed | Disadvantages | Advantages |
| SGRQ [23] | Disease-specific instrument designed to measure impact on overall health, daily life and perceived well-being in patients with obstructive airways disease | 50 | Symptoms component; activities that cause or are limited by breathlessness; impact components (social functioning, psychological disturbances resulting from airways disease) | Originally developed for COPD and asthma; lengthy, difficult questionnaire | Used in many IPF clinical trials |
| SGRQ-I | IPF-specific version of original SGRQ | 34 | Symptoms component; activities that cause or are limited by breathlessness; impact components (social functioning, psychological disturbances resulting from airways disease) | Limited experience | Questions more relevant for IPF than SGRQ |
| CAT [24] | Patient-completed questionnaire assessing globally the impact of COPD on health status | 8 (one question assessing impact on sleep) | Unidimensional, assesses cough, sputum, dyspnoea and chest tightness | Clinically important minimal difference remains to be rigorously studied | Simple and quick |
| K-BILD [25] | Brief, valid, self-completed health status measure for ILD | 15 | Three health domains: psychological, breathlessness and activities, and chest symptoms | Limited experience in clinical trials, although increasingly used | Developed to assess patients with ILD |
| ATAQ-IPF [3] | Multidimensional questionnaire designed for IPF | 74 | 13 domains including dyspnoea, cough, fatigue, independence and emotional health | Covers the patient identified domains of interest | |
| L-IPF [26] | Modified variant of the ATAQ-IPF, consisting of two modules: symptoms and impacts | Severity and impact of dyspnoea, cough and energy; global impact | Not available yet | Adapted with feedback from patients | |
| IPF-PROM | Concise questionnaire to assess QoL in IPF; currently in development | Not available yet | Not available yet | Developed with patients and caregivers | |
| PESaM | Generic and disease-specific module; evaluates patients' expectations, experiences and satisfaction with disease-modifying drugs | Not validated yet; responsiveness unknown | Developed together with IPF patients | ||
| IPF-PREM | Questionnaire to assess experiences with care delivery | Not available yet | Measures experiences of patients |
IPF: idiopathic pulmonary fibrosis; SGRQ: St. George's Respiratory Questionnaire; SGRQ-I: SGRQ for patients with IPF; CAT: COPD Assessment Test; K-BILD: King's Brief Interstitial Lung Disease; ATAQ-IPF: A Tool to Assess Quality of Life in IPF; L-IPF: living with IPF; IPF-PROM: IPF-Patient reported outcome measure; PESaM: Patient Experiences and Satisfaction with Medications; IPF-PREM: IPF-patient reported experience measure; COPD: chronic obstructive pulmonary disease; ILD: interstitial lung disease; QoL: quality of life. Modified from [14].