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Patient-reported outcomes in Takayasu's arteritis
Fatma Alibaz-Oner1, Antoine G Sreih2, Peter A Merkel3
1Marmara university, school of medicine, division of rheumatology, Istanbul, Turkey.
Patient-reported outcomes (PROs) are crucial for assessing Takayasu's arteritis (TAK) impact. Current generic tools inadequately capture the disease-specific effects on patients' quality of life, highlighting the need for dedicated measures.
Area of Science:
- Rheumatology
- Patient-Centered Care
- Health Outcomes Research
Background:
- Patient-reported outcomes (PROs) are vital for assessing patient experiences and treatment effects directly.
- There is a growing global emphasis on patient-centered care within rheumatology.
- Takayasu's arteritis (TAK) management and research require effective assessment of disease impact on patients' lives.
Purpose of the Study:
- To highlight the current lack of disease-specific PRO measures for Takayasu's arteritis (TAK).
- To underscore the limitations of generic PRO instruments in capturing TAK-specific effects on quality of life.
- To emphasize the ongoing development of specific outcome measures for TAK.
Main Methods:
- Review of existing literature on PROs in rheumatology and Takayasu's arteritis.
- Analysis of the utility of generic PRO instruments (e.g., Short Form-36) in TAK patients.
- Examination of current initiatives by the Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group.
Main Results:
- Generic PROs indicate impaired health-related quality of life (HRQoL), functional status, anxiety, and depression in TAK patients.
- Generic PROs are insufficient for detailing the specific impact of TAK on daily living and quality of life.
- The need for disease-specific PRO measures in TAK is evident.
Conclusions:
- Developing disease-specific PRO measures for Takayasu's arteritis is essential for accurate assessment of patient well-being.
- Such measures will improve clinical care and research by capturing the unique aspects of living with TAK.
- Ongoing efforts aim to provide validated tools for evaluating TAK patients' quality of life.
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