TABLEĀ 1

Summary of the most widely used disease-specific patient-reported outcome measures (PROs) in IPF

PRODescriptionNumber of itemsDomains assessedDisadvantagesAdvantages
SGRQ [23]Disease-specific instrument designed to measure impact on overall health, daily life and perceived well-being in patients with obstructive airways disease50Symptoms 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 questionnaireUsed in many IPF clinical trials
SGRQ-IIPF-specific version of original SGRQ34Symptoms component; activities that cause or are limited by breathlessness; impact components (social functioning, psychological disturbances resulting from airways disease)Limited experienceQuestions more relevant for IPF than SGRQ
CAT [24]Patient-completed questionnaire assessing globally the impact of COPD on health status8 (one question assessing impact on sleep)Unidimensional, assesses cough, sputum, dyspnoea and chest tightnessClinically important minimal difference remains to be rigorously studiedSimple and quick
K-BILD [25]Brief, valid, self-completed health status measure for ILD15Three health domains: psychological, breathlessness and activities, and chest symptomsLimited experience in clinical trials, although increasingly usedDeveloped to assess patients with ILD
ATAQ-IPF [3]Multidimensional questionnaire designed for IPF7413 domains including dyspnoea, cough, fatigue, independence and emotional healthCovers the patient identified domains of interest
L-IPF [26]Modified variant of the ATAQ-IPF, consisting of two modules: symptoms and impactsSeverity and impact of dyspnoea, cough and energy; global impactNot available yetAdapted with feedback from patients
IPF-PROMConcise questionnaire to assess QoL in IPF; currently in developmentNot available yetNot available yetDeveloped with patients and caregivers
PESaMGeneric and disease-specific module; evaluates patients' expectations, experiences and satisfaction with disease-modifying drugsNot validated yet; responsiveness unknownDeveloped together with IPF patients
IPF-PREMQuestionnaire to assess experiences with care deliveryNot available yetMeasures 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].