Development of the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd)-a new patient-reported outcome measure.
Fatigue
active collaboration
axial spondyloarthritis
co-production
energy
measurement
outcome assessment
patient-reported outcomes
qualitative
Journal
Rheumatology advances in practice
ISSN: 2514-1775
Titre abrégé: Rheumatol Adv Pract
Pays: England
ID NLM: 101736676
Informations de publication
Date de publication:
2022
2022
Historique:
received:
14
02
2022
accepted:
29
03
2022
entrez:
25
4
2022
pubmed:
26
4
2022
medline:
26
4
2022
Statut:
epublish
Résumé
The aim was to co-produce and test a potential new patient-reported outcome measure (PROM), the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd), providing vital qualitative confirmation of conceptual relevance, clarity and acceptability. Informed by measurement theory, we collaborated with patient partners throughout a three-stage, iterative process of PROM development. In stage 1, informed by patient interviews, reviews exploring patients' fatigue experiences and existing PROMs of fatigue, an initial measurement framework of axial spondyloarthritis (axSpA) fatigue and energy and candidate items were defined. In stage 2, the relevance and acceptability of the measurement framework and candidate items were assessed qualitatively by focus group participants. In stage 3, patients participated in pre-testing interviews to assess item comprehensiveness, relevance, acceptability and comprehensibility. Stage 1 informed the development of an initial five-domain measurement framework with 59 candidate items. In stage 2, five patients and seven health-care professionals participated in four focus groups to derive a 40-item model of fatigue and energy. Collaborative engagement with patient research partners supported refinement of questionnaire structure and content further. Pre-testing with ten patients across two interview rounds in stage 3 produced a four-domain, 30-item long-form questionnaire. An active collaboration with patients and health-care professionals has supported the co-production of a potential new PROM of axSpA fatigue, underpinned by strong evidence of face and content validity. The WASTEd extends the assessment of fatigue beyond severity, highlighting the importance of symptom frequency, energy and self-management. Future research will involve psychometric evaluation, supporting item reduction, structural refinement and confirmation of PROM validity.
Identifiants
pubmed: 35465627
doi: 10.1093/rap/rkac027
pii: rkac027
pmc: PMC9021732
doi:
Types de publication
Journal Article
Langues
eng
Pagination
rkac027Informations de copyright
© The Author(s) 2022. Published by Oxford University Press on behalf of the British Society for Rheumatology.
Références
J Pain Symptom Manage. 1997 Feb;13(2):63-74
pubmed: 9095563
CMAJ. 1986 Apr 15;134(8):889-95
pubmed: 3955482
J Pain Symptom Manage. 2013 Feb;45(2):191-201
pubmed: 22917712
BMJ Open. 2022 Feb 25;12(2):e053958
pubmed: 35217538
Ann Rheum Dis. 2009 Jun;68(6):777-83
pubmed: 19297344
J Clin Nurs. 2011 Aug;20(15-16):2204-16
pubmed: 21752119
Med Care. 1992 Jun;30(6):473-83
pubmed: 1593914
Rheumatology (Oxford). 2014 Mar;53(3):552-6
pubmed: 24307290
J Rheumatol. 2011 Feb;38(2):191-4
pubmed: 21285178
Am J Kidney Dis. 2019 Aug;74(2):179-192
pubmed: 30955947
Musculoskeletal Care. 2013 Mar;11(1):39-50
pubmed: 22825963
Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11:S263-86
pubmed: 22588750
J Rheumatol. 1994 Dec;21(12):2286-91
pubmed: 7699630
Ann Rheum Dis. 2009 Jun;68 Suppl 2:ii1-44
pubmed: 19433414
Qual Life Res. 2010 Oct;19(8):1087-96
pubmed: 20512662
J Pain Symptom Manage. 2009 Jan;37(1):107-28
pubmed: 19111779
Value Health. 2011 Dec;14(8):967-77
pubmed: 22152165
Rheumatology (Oxford). 2018 Aug 1;57(suppl_6):vi29-vi34
pubmed: 30445484
Rheumatol Adv Pract. 2018 May 29;2(2):rky017
pubmed: 31431965
Ann Rheum Dis. 2010 Jan;69(1):102-7
pubmed: 19282309
Arthritis Rheum. 2002 Jun 15;47(3):242-8
pubmed: 12115152
Value Health. 2011 Dec;14(8):978-88
pubmed: 22152166
Health Qual Life Outcomes. 2014 Feb 05;12:15
pubmed: 24499454
BMC Musculoskelet Disord. 2013 May 09;14:163
pubmed: 23659344
J Appl Psychol. 1948 Jun;32(3):221-33
pubmed: 18867058