Assessing fatigue in adults with axial spondyloarthritis: a systematic review of the quality and acceptability of patient-reported outcome measures.

Nathan A Pearson,Jonathan C Packham,Elizabeth Tutton,Helen Parsons,Kirstie L Haywood

doi:10.1093/rap/rky017

Abstract

ObjectiveThe aim was to evaluate the quality and acceptability of patient-reported outcome measures used to assess fatigue in patients with axial spondyloarthritis.MethodsA two-stage systematic review of major electronic databases (1980–2017) was carried out to: (i) identify measures; and (ii) identify evaluative studies. Study and measurement quality were evaluated following international standards. Measurement content was appraised against a conceptual model of RA-fatigue.ResultsFrom 387 reviewed abstracts, 23 articles provided evidence for nine fatigue-specific measures: 6 multi-item and 3 single-item. No axial spondyloarthritis-fatigue-specific measure was identified. Evidence of reliability was limited, but acceptable for the Multi-dimensional Fatigue Inventory (internal consistency, test–retest) and Short Form 36-item Health Survey Vitality subscale (SF-36 VT; internal consistency). Evidence of construct validity was moderate for the Functional Assessment of Chronic Illness Therapy-Fatigue and 10 cm visual analog scale, limited for the SF-36 VT and not available for the remaining measures. Responsiveness was rarely evaluated. Evidence of measurement error, content validity or structural validity was not identified. Most measures provide a limited reflection of fatigue; the most comprehensive were the Multi-dimensional Assessment of Fatigue, Multi-dimensional Fatigue Inventory-20, Functional Assessment of Chronic Illness Therapy-fatigue and Fatigue Severity Scale.ConclusionThe limited content and often poor quality of the reviewed measures limit any clear recommendation for fatigue assessment in this population; assessments should be applied with caution until further robust evidence is established. Well-developed, patient-derived measures can provide essential evidence of the patient’s perspective to inform clinical research and drive tailored health care. The collaborative engagement of key stakeholders must seek to ensure that future fatigue assessment is relevant, acceptable and of high quality.

Highlights

Pain, stiffness, reduced mobility and fatigue are cardinal features of axial spondyloarthritis, including Ankylosing Spondylitis (AS). [1]
Current assessment guidance is limited to a single-item measure of fatigue severity [4], which underestimates the often profound and wide-ranging impact of fatigue on an individual’s life
No measure was specific to the experience of axial spondyloarthritis (axSpA)-fatigue and none had been evaluated for their relevance to axSpA patients

Summary

Introduction

Stiffness, reduced mobility and fatigue are cardinal features of axial spondyloarthritis (axSpA), including Ankylosing Spondylitis (AS). [1]. Fatigue assessment in axSpA clinical trials increased significantly from just 17.1% of trials completed pre-2001 to 84% post-2001 [5], with most trials (84%) using the single fatigue-severity visual analogue scale (VAS) recommended in the assessment guidance [6]. Patients’ fatigue experience may, be better captured with multi-item, multi-domain patient-reported outcome measures (PROMs), providing a structured, patient-reported assessment of health [9, 10]. These may be generic – containing items reflecting general health and completed by any population – or specific – to a condition (e.g., axSpA), an aspect of health (e.g., fatigue), or a population (e.g., children). The quality, acceptability and relevance of measures was not explored, limiting evidence-based recommendations

Methods

Results

Conclusion