Objective
The aim was to describe how the patient perspective is captured in clinical research of ANCA-associated vasculitis (AAV).
Methods
This integrative review included 2149 publications found in four different databases and manual searches. After screening, 156 articles remained. All articles were sorted and categorised, and 77 original articles were further analysed.
Results
The patient perspective was captured with patient-reported outcome measures (PROMs), single-item questionnaires, project-specific questionnaires, and interviews. The most common aspects measured were health-related quality of life, anxiety and depression, and fatigue, while the least common were lifestyle habits, relationships, and self-management.
Conclusion
The patient perspective was captured predominantly with generic PROMs, and occasionally with a qualitative approach. AVV is a lifelong disease, and the results from this review show that not all aspects of importance to patients are covered with the PROMs used in research. Future studies should include the areas that are the most important for patients.
LAY SUMMARY
What does this mean for patients?
People living with ANCA-associated vasculitis (AAV) can be affected by the disease in different ways and can experience several symptoms that affect everyday life. We have studied how the patient perspective has been captured in research investigating AAV. We investigated what part of a patient’s experience had been included in the research and how that was captured. After looking at 156 different articles about AAV from 1997 until 2023, we found that the patient perspective was mostly captured through questionnaires evaluating quality of life, or anxiety and depression. Less common were questionnaires that assessed lifestyle habits or relationships. Interview studies were not often used. We noticed that the parts of living with AVV, such as airway problems, problems related to medication and side effects, and concerns about the future, were seldom included in the research. This study adds to our understanding of how the patient experience of AAV is investigated in research. Our results give researchers insight into which measurements are commonly used in research, as well as areas that have not been included in research and should be investigated further. There is lack of studies that use interviews to ask patients about their experiences of living with AAV.
