Qualitative study exploring symptoms and impact of IgAN
Research type
Research Study
Full title
Understanding Patients’ Experiences Of Symptoms And Impacts Of Immunoglobulin A Nephropathy (IgAN): A Qualitative Concept Elicitation Study
IRAS ID
316188
Contact name
Sarah Clifford
Contact email
Sponsor organisation
Takeda
Duration of Study in the UK
0 years, 2 months, 31 days
Research summary
Immunoglobulin A nephropathy (IgAN) is a chronic and progressive disease that affects the kidneys. Over time as the functioning of the kidneys gets worse, people with IgAN experience a wide range of symptoms that get in the way of life; however, their experiences of symptoms and the impact of IgAN on daily life remain unexplored, particularly at the earlier stages of the disease. Therefore, the proposed study aims to address this research gap through 18 one-to-one audio-recorded interviews over the telephone or via videoconference with adults living with IgAN from different backgrounds and at different stages of the disease (early to mild) to build a better understanding of symptoms, their relative importance and impact on day-to-day life from the perspective of patients. The interview questions will be broad and open-ended so that the discussion is centred on what is important to each individual, e.g. Please tell me about the symptoms of your IgAN. It is expected that each interview will last 60 minutes. In the UK, participants will be recruited from one NHS secondary care service. The findings will reveal what matters most to people living with IgAN which in turn will ensure that the most meaningful and relevant outcomes related to symptoms and impact are measured to guide treatment decisions.
REC name
South East Scotland REC 01
REC reference
22/SS/0109
Date of REC Opinion
6 Feb 2023
REC opinion
Further Information Favourable Opinion