IntroductionPatient-reported outcome measures (PROM) or self-completed questionnaires have been used to report outcomes in osteoarthritis (OA) for over 35 years. Choices will always need to be made about what should be measured and, if relevant, what would be the most appropriate PROM to use. The current study aims to describe the available PROMs used in OA and their performance quality, so that informed choices can be made about the most appropriate PROM for a particular task.MethodsThe study included a systematic search for PROMs that have been in use over 17 years (period 2000–2016), and to catalogue their psychometric properties, and to present the evidence in a user-friendly fashion.Results78 PROMs were identified with psychometric evidence available. The domains of pain, self-care, mobility and work dominated, whereas domains such as cleaning and laundry and leisure, together with psychological and contextual factors, were poorly served. The most frequently used PROMs included the Western Ontario McMaster Osteoarthritis Index, the Short Form 36 and the Knee Disability and Osteoarthritis Outcome Score which, between them, appeared in more than 4000 papers. Most domains had at least one PROM with the highest level of psychometric evidence.ConclusionA broad range of PROMs are available for measuring OA outcomes. Some have good psychometric evidence, others not so. Some important psychological areas such as self-efficacy were poorly served. The study provides a current baseline for what is available, and identifies the shortfall in key domains if the full biopsychosocial model is to be explored.

Background: The World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) as a scientific method of disability data collection comprised of >1,200 categories describing the spectrum of impairment types (functional, symptoms-based and anatomical) under the bio-psycho-social model with consideration of environmental and personal factors (pf). ICF Core Sets and ICF Checklists are streamlined disease-specific resources for clinical use, service provision, and for use in health economics and health policy. ICF can disclose strengths and weaknesses across multiple patient-reported outcome measures (PROMs) and help consolidate best-fitting question-items from multiple PROMs. Interstitial lung diseases (ILDs), are generally progressive, with restrictive physiology sometimes occurring in the context of multi-organ autoimmunity/inflammatory conditions such as connective tissue diseases (CTDs). In spite of significant associated morbidity and potential disability, ILD has yet to be linked to the ICF.Methods: Each instrument and their question-items within the consensus-recommended core sets for clinical trials in ILD were deconstructed to single concept units, and then linked per updated ICF linkage rules. Inter-linker agreement was established. Three additional subsequently validated measures were also included.Results: One-hundred-eleven ICF categories were identified for ten PROMs and three traditional objective measures that were amenable to ICF linkage. The proportion of agreement ranged from 0.79 (95% CI: 0.62, 0.91) to 0.93 (0.76, 0.99) with the overall proportion of inter-linker agreement being very high 0.86 (0.82, 0.89) for the initial instruments, with 94–100% for the three additional PROMs. Thirty-four new ‘Personal Factors’ emerged to capture disease-specific qualities not elsewhere described in ICF, e.g. ‘pf_embarrassed by cough’ or ‘pf_panic/afraid when can’t get a breath’.Conclusion: This first known effort in ICF linkage of ILD has provided important revelations on the current utility of the ICF in lung disease. Results have indicated areas for meaningful assessment of ICF descriptors for lung impairment. The mapping across PROMs provides insight into possibilities of developing more streamline and precise instrumentation. Finally, familiarity with the ICF in ILD may enable clinicians to experience a smoother transition with the imminent harmonization of ICD and ICF, ICD-11.

IntroductionThe importance of patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA) clinical studies has been recognised for many years. The current study aims to describe the RA PROMs used over the past 20 years, and their performance metrics, to underpin appropriate tool selection.MethodsThe study included a systematic search for PROMs that have been in use over the period 2000–2019, with detailed documentation of their psychometric properties, and a user-friendly presentation of the extensive evidence base.Results125 PROMs were identified with psychometric evidence available. The domains of pain, fatigue, emotional functions, mobility, physical functioning and work dominated, with self-efficacy and coping as personal factors. Domains such as stiffness and sleep were poorly served. The most frequently used PROMs included the Health Assessment Questionnaire Disability Index (HAQ), the Short Form 36 (SF-36), the EuroQoL and the Modified HAQ which, between them, appeared in more than 3500 papers. Strong psychometric evidence was found for the HAQ, and the SF-36 Physical Functioning and Vitality (fatigue) domains. Otherwise, all domains except stiffness, sleep, education and health utility, had at least one PROM with moderate level of psychometric evidence.ConclusionThere is a broad range of PROMs for measuring RA outcomes, but the quality of psychometric evidence varies widely. This work identifies gaps in key RA domains according to the biopsychosocial model.

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