Pearson, Nathan (2019) Improving the assessment of fatigue in axial spondyloarthritis : improving patient outcomes. PhD thesis, University of Warwick.

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Abstract

Background:
Fatigue is an important symptom for people with axial spondyloarthritis (axSpA). Current measurement relies on a single item visual analogue scale of fatigue severity that provides a limited assessment of fatigue. This thesis sought to improve the understanding and measurement of axSpA-fatigue and capture what matters to patients. Coupled with current evidence and patient and clinician involvement, I developed a novel patient-reported outcome measure (PROM) for use in both clinic and research.

Methods:
The four-phase mixed-methods research process was: i) a systematic review to identify whether there was a need for a new PROM; ii) phenomenology-based semi-structured interviews to develop a lived experience and measurement framework; iii) item (question) generation and refinement; and iv) a psychometric evaluation of the new PROM. A patient research partner group was incorporated throughout the project as co-producers of the PROM.

Results:
The systematic review identified 9 PROMs of limited quality and relevance to axSpA-fatigue. Interviews with patients identified ‘achieving balance’ as an active process of integrating axSpA symptoms and fatigue into daily life through three themes: having energy, engaging in everyday life and making sense of axSpA. Energy emerged as a related but distinct component in axSpA-fatigue experience. The measurement framework of axSpA-fatigue consisted of four domains (symptoms, impact, psychological/emotional wellbeing, self-management) which underpinned the content of a 30-item PROM. Psychometric evaluation showed that the PROM is good quality, producing a four domain (fatigue, energy, symptoms, control) 18-item short form version – the Warwick Axial Spondyloarthritis measure of faTigue and Energy (WASTEd).

Conclusion:
The WASTEd is a co-produced, axSpA-fatigue specific PROM. Its use will help make visible the work patients do to balance their axSpA and fatigue symptoms and support the development of appropriate interventions. Further psychometric testing of the WASTEd is required to determine evidence of its reliability (test-retest) and responsiveness.

Item Type:	Thesis (PhD)
Subjects:	R Medicine > R Medicine (General) R Medicine > RC Internal medicine
Library of Congress Subject Headings (LCSH):	Spondyloarthropathies -- Patients, Fatigue, Outcome assessment (Medical care)
Official Date:	October 2019
Dates:	Date Event October 2019 UNSPECIFIED
Institution:	University of Warwick
Theses Department:	Warwick Medical School
Thesis Type:	PhD
Publication Status:	Unpublished
Supervisor(s)/Advisor:	Haywood, Kirstie L. ; Tutton, Liz ; Parsons, Helen (Researcher in medicine) ; Martindale, Jane (Physiotherapist) ; Packham, Jon
Sponsors:	National Ankylosing Spondylitis Society
Format of File:	pdf
Extent:	xv, 346 leaves : illustrations (some colour)
Language:	eng

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