ArticleJournal of patient-reported outcomes2023
Qualitative concept elicitation and cognitive debriefing interviews of symptoms, impacts and selected customized PROMIS
Article in Journal of patient-reported outcomes, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed, 15 citations in OpenAlex.
- The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) scale in patients with axial spondyloarthritis: psychometric properties and clinically meaningful thresholds for interpretation.Journal of patient-reported outcomes · 2024Trial
- Design and evaluation of PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Burnout in Japanese Internists and Primary Care Physicians in 2024: The Prevalence and Risk Factors Using Structural Equation Modeling.Internal medicine (Tokyo, Japan) · 2025Article
- Causes of Sleep Disturbance in Early ASAS Spondyloarthritis: A Retrospective Long-Term Experience.Journal of personalized medicine · 2025Article
- Review
- Content development for a new item-bank for measuring multifocal contact lens performance.Journal of patient-reported outcomes · 2024Article
Corrections and comments
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Authors and funding
9 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSleep disturbance, pain, and fatigue are key symptoms/impacts of axial spondyloarthritis (axSpA). Three customized Patient-Reported Outcomes Measurement Information System (PROMIS
methodsNon-interventional, cross-sectional, qualitative (concept elicitation [CE] and cognitive debriefing [CD]) study. Participants took part in 90-min telephone interviews. The CE section used open-ended questions to elicit information about axSpA symptoms and impacts. The CD section involved a 'think-aloud' exercise where participants read out each instruction, item, and response option for the customized PROMIS
resultsIn total, there were 28 participants (non-radiographic axSpA, n = 12; ankylosing spondylitis, n = 16), from the US (n = 20) and Germany (n = 8). Mean age was 52.8 years, and 57% were male; mean time since diagnosis was 9.5 years. The CE section identified 12 distinct symptoms that characterized axSpA: pain, sleep problems, fatigue/tiredness, stiffness, swelling, vision/eye issues, restricted body movements, headache/migraine, spasms, change in posture/stature, balance/coordination problems, and numbness. Pain, sleep problems, and fatigue/tiredness were experienced by ≥ 90% of participants, occurring simultaneously and exacerbating one another. Participants reported axSpA impacted their lives across six domains of health-related quality of life (HRQoL): physical functioning (100%), emotional wellbeing (89%), work/volunteering (79%), social functioning (75%), activities of daily living (61%) and cognitive functioning (54%). Impacts were most frequently associated with pain, stiffness, and fatigue. CD showed the PROMIS
conclusionsPain, sleep problems and fatigue are pivotal symptoms of axSpA and associated with HRQoL impacts. These results were used to update a conceptual model of axSpA which was originally developed based on a targeted literature review. Interpretability and content validity of the customized PROMIS
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