Understanding patient and physician experiences and attitudes toward care in Takayasu arteritis.

Investigating Management, Perspectives and Attitudes Towards Care in Takayasu Arteritis

This project asks adults with Takayasu arteritis and the doctors who treat them to complete online questionnaires to see what their experiences and care priorities are.

Quick facts

• Study type: Observational
• Enrollment: 50 (estimated)
• Ages: 18 Years and up
• Sex: All
• Sponsor: University of Edinburgh (other)
• Locations: 1 site (Edinburgh)
• Trial ID: NCT07351422 on ClinicalTrials.gov

What this trial studies

The study uses two separate anonymous online questionnaires—one for patients (about 25 minutes) and one for physicians (about 15 minutes)—with multiple-choice and short-answer questions. Patient questions cover symptoms, treatments received, and concerns or priorities, while physician questions address diagnosis, treatment choices, and management challenges. Participation is limited to UK-based adults with a formal TAK diagnosis and physicians involved in their care. The goal is to compare patient and clinician perspectives to identify gaps and priorities in TAK care.

Who should consider this trial

Good fit: Ideal candidates are adults (≥18) in the UK with a confirmed diagnosis of Takayasu arteritis, and UK physicians who are involved in managing these patients.

Not a fit: Individuals under 18, those without a formal TAK diagnosis, people lacking capacity to consent, and non-UK residents are not eligible and unlikely to benefit from participation.

Why it matters

Potential benefit: If successful, the findings could highlight unmet needs and priorities that help improve clinical care, patient support, and future guidelines for TAK.

How similar studies have performed: Survey and registry efforts in other forms of vasculitis have provided useful insights into patient experiences and practice patterns, but questionnaire data specifically focused on TAK are relatively limited.

Eligibility criteria

Inclusion Criteria:

For the patient questionnaire:

* Age ≥ 18 years
* A formal diagnosis of TAK

For the physician questionnaire

• A physician involved in the management/decision-making for patients diagnosed with TAK

Exclusion Criteria:

For the patient questionnaire:

* Age \< 18 years
* Lack of a formal diagnosis of TAK
* Patients without mental capacity or willingness to provide informed consent
* Not UK based

For the physician questionnaire

* Not involved in the management/ decision making for patients diagnosed with TAK
* Not willing to take part
* Not UK based

Where this trial is running

Edinburgh

• University of Edinburgh — Edinburgh, United Kingdom (RECRUITING)

Study contacts

• Study coordinator: Alexandra Armstrong

Conditions: Takayasu Arteritis