TABLE 2

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

PRODescriptionNumber of itemsDomains assessedDisadvantagesAdvantages
Dyspnoea
 SOBQ [27]Self-administered rating of dyspnoea associated with activities of daily living2421 items assess severity of shortness of breath during specific activities of daily life; three additional items ask about limitations due to: shortness of breath, fear of harm from overexertion and fear of shortness of breath
 mMRC [28]Assesses the severity of functional dyspnoea using a graded system (grade 0 (not troubled with breathlessness) to grade 4 (too breathless to leave the house))1Quick, easy tool for use in daily practice; relates to disease progression
 BDI-TDI [29]BDI: interviewer-administered rating of severity of dyspnoea at a single state, it provides a multidimensional measurement of dyspnoea based on three components that evoke dyspnoea in activities of daily living, in symptomatic individuals
TDI: measures changes in dyspnoea severity from the baseline established by the BDI
24BDI: functional impairment, magnitude of task, magnitude of effort; recall: during the past 2 weeks
TDI: change in functional impairment, change in magnitude of task, change in magnitude of effort
Few specific instructions included in the instrumentMeasures both baseline and change over time
 Borg ScaleMeasures level of dyspnoea scored on a scale from 0 to 10Only measures dyspnoea during exertion, does not measure dyspnoea over timeUseful during 6-min walk test in daily practice
 FACIT-D [30, 31]Evaluates dyspnoea severityFACIT-D short form: 10 items
FACIT-D long form: 33 items
Asking patients to evaluate their shortness of breath across a range of functional activities completed over a weekDisease specific measure
Cough
 LCQ [32]Patient-reported questionnaire evaluating the impact of a cough on QoL19Three domains: physical, psychological and socialLimited experience in IPF
Its specific nature may limit its usefulness when a broader assessment of QoL is desired, patients may need to complete multiple questionnaires if more comprehensive assessment is required
Reliable, responsive to changes, easy to complete
 CQLQValidated measure of cough-specific QoL28Six domainsGood validity for total score in IPF, but not for all domainsComprehensive; responsive outcome measure
Fatigue
 FAS [33]General fatigue questionnaire10Questions reflect physical and mental fatigueQuick and easy to complete
 FACIT-FS [34]Questionnaire to assess fatigue in patients with cancer13Not specific for ILDReliable and valid scale
Anxiety
 HADS [35]Measures anxiety and depression in a general medical population14Comprises seven questions for anxiety and seven for depressionShould not be used as a diagnostic test; not originally developed in ILDReliable screening tool for anxiety and depression; simple and easy to use
 GAD-7 [36]Measure of GAD7Not specific to ILDValid and efficient tool for screening for GAD and assessing its severity in clinical practice and research

IPF: idiopathic pulmonary fibrosis; SOBQ: Shortness of Breath Questionnaire (University of California San Diego); mMRC: modified Medical Research Council; BDI-TDI: Baseline Dyspnoea Index-Transition Dyspnoea Index; FACIT-D: Functional Assessment of Chronic Illness Therapy Dyspnoea; LCQ: Leicester Cough Questionnaire; CQLQ: cough-specific quality-of-life questionnaire; FAS: Fatigue Assessment Scale; FACIT-FS: Functional Assessment of Chronic Illness Therapy Fatigue Scale; HADS: Hospital Anxiety and Depression Scale; GAD-7: Generalised Anxiety Disorder-7; QoL: quality of life; ILD: interstitial lung disease. Modified from [14].