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Patient-reported outcomes in vasculitis
Helena Crawshaw1, Shalini Janagan2, Keziah Austin3
1Rheumatology Department Gloucestershire Royal Hospital NHS Trust, Great Western Road, Gloucester, Gloucestershire, GL1 3NN, UK.
Best Practice & Research. Clinical Rheumatology
|June 5, 2023
Summary
Patient perspectives are crucial in systemic vasculitis care. This paper reviews patient-reported outcome and experience measures (PROMs/PREMs) to enhance patient-centered care and guide future research in vasculitis management.
Area of Science:
- Rheumatology and Immunology
- Patient-Reported Outcomes Research
Background:
- Systemic vasculitis involves multiple organ systems, significantly impacting patients' health-related quality of life (HRQoL).
- Effective management requires understanding the patient's perspective on their disease and treatment.
- Patient-centered care necessitates incorporating patient views into clinical practice and research.
Purpose of the Study:
- To review the application of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in systemic vasculitis.
- To discuss the utility of generic, disease-specific, and treatment-specific PROMs and PREMs.
- To identify future research directions for PROMs and PREMs in vasculitis.
Main Methods:
- Literature review and synthesis of existing research on PROMs and PREMs in systemic vasculitis.
- Categorization of PROMs and PREMs based on their specificity (generic, disease-specific, treatment-specific).
- Discussion of the role of these measures in evaluating patient-centered care.
Main Results:
- PROMs and PREMs are vital tools for assessing health-related quality of life (HRQoL) in systemic vasculitis patients.
- Various generic, disease-specific, and treatment-specific measures are available and applicable.
- Integrating these measures can provide a comprehensive view of the patient's healthcare journey.
Conclusions:
- Patient-reported outcome and experience measures are essential for comprehensive systemic vasculitis care.
- Further research is needed to refine and validate specific PROMs and PREMs for vasculitis.
- Utilizing these measures will advance patient-centered approaches in managing systemic vasculitis.
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