Takayasu Arteritis, Takayasu Arteritis (TAK)
Conditions
Brief summary
This study aims to understand the experiences of patients with Takayasu arteritis (TAK) and how physicians manage the condition. To achieve this, two separate questionnaires will be conducted: one for patients and one for physicians.
Detailed description
This study aims to investigate the experiences and perceptions of patients with Takayasu arteritis regarding their disease, as well as the perspectives of physicians regarding the management and treatment of these patients. Patients with TAK will be invited to complete an anonymous online (Online Surveys) questionnaire, which will take approximately 25 minutes and will consist of multiple-choice and short-answer questions. The questionnaire will ask about their experience with the condition, symptoms, treatments they have received, and any concerns or priorities they have regarding their care. Physicians who treat TAK will also be invited to complete a separate online questionnaire, taking around 15 minutes and also consisting of multiple-choice and short-answer questions. This will explore how they diagnose and manage TAK, their choice of treatments, and any challenges they face in treating the condition
Interventions
OTHERQuestionnaire
An online annoymous questionnaire consisting of short-answer and multiple-choice questions
Sponsors
University of Edinburgh
Study design
Observational model
CASE_ONLY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Patient Perspective | Day 1 | To understand the lived experiences of individuals with TAK, including their symptoms, health status post-diagnosis, treatment priorities, and concerns. The questionnaire covers the following topics: * Basic background information * Living with Takayasu arteritis * Changes to health since diagnosis * Physical activity and exercise habits- measured by the International Physical Activity Questionnaire (IPAQ) * Smoking history * Mental well-being- measured by the EQ-5D instrument * Nutrition and diet * Personal views and priorities on management |
| Physician Perspective | Day 1 | To evaluate current clinical management strategies for TAK, identify treatment priorities, and highlight areas of unmet need in clinical practice. The physician questionnaire covers the following topics: * Clinical background and experience with TAK patients * Diagnostic and treatment strategies for TAK * Consideration of cardiovascular disease risk in TAK management * Physician priorities and unmet needs of management |
Countries
United Kingdom
Contacts
CONTACTAlexandra Armstrong
Outcome results
None listed