Abstract: FR-PO870
Exploring the Impact of Loin Pain in IgA Nephropathy: A United Kingdom-Wide Mixed-Methods Qualitative Study and Pilot Survey
Session Information
- IgA Nephropathy: Clinical, Outcomes, and Therapeutics
October 25, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Newman, Kristina L., University of Leicester, Leicester, United Kingdom
- Barratt, Jonathan, University of Leicester, Leicester, United Kingdom
- Szklarzewicz, Justyna, University of Leicester, Leicester, United Kingdom
- Roberts, Lydia E., University of Leicester, Leicester, United Kingdom
- Thomas, Roisin Clare, University of Leicester, Leicester, United Kingdom
- Smith, Alice C., University of Leicester, Leicester, United Kingdom
- Plummer, Zoe E., UK Kidney Association, Bristol, United Kingdom
- Pywell, Susan, UK Kidney Association, Bristol, United Kingdom
- Masoud, Sherry, UK Kidney Association, Bristol, United Kingdom
- Gale, Daniel P., Royal Free London NHS Foundation Trust, London, United Kingdom
- Pitcher, David, UK Kidney Association, Bristol, United Kingdom
- Selvaskandan, Haresh, University of Leicester, Leicester, United Kingdom
Group or Team Name
- Mayer IgAN Group and RaDaR.
Background
Loin pain (LP) is a commonly reported symptom by patients with IgA nephropathy (IgAN). Currently there is little known about the frequency of LP, the impact of LP on quality of life or appropriate strategies to manage LP in IgAN.
Methods
An online pilot survey was developed with input from IgAN patients and the National Registry of Rare Kidney Diseases (RaDaR). The survey recorded demographic, kidney disease, and LP parameters, alongside The Kidney Symptom Score, Short-Form McGill Pain Questionnaire-2, Pain Self-Efficacy Questionnaire, and Brief Illness Perception Questionnaire. A separate semi-structured interview study with patients, carers and healthcare professionals (HCPs) explored experiences of loin pain through thematic analysis.
Results
366 patient responses were analysed. 261 (71.1%) experienced LP; 28% currently, 33% in the last month, and 39.1% in the past. 70.7% experienced LP at least monthly. 80.5% reported LP as always the same, with ‘aching’ being the most common descriptor used. LP was associated with a poorer self-perception of mental and physical health, and strongly associated with the presence of systemic symptoms including itching, anorexia, and loss of libido. Only 41.6% could manage their LP with analgesics. 44.7% spoke to HCPs about LP, but 61.7% did not find this helpful. LP affected mobility in 43.9%.
48 interviews were conducted; 21 patients, 14 carers, and 13 HCPs (27% male, 73% female, 70% White British, age range 23-75 years). Five themes were developed in the thematic coding process; 1) ‘Achy pain’ in the ‘kidney area’; 2) Managing LP with limited options; 3) LP as a warning: anxiety of declining kidney function; 4) Impact to daily life dependent on severity; 5) Differing opinions between patients and healthcare professionals.
Conclusion
Loin pain is a common symptom in patients with IgAN, affecting the majority of respondents. It has a negative impact on quality of life and self-perception of physical and mental health. Despite this, options to manage LP in IgAN remain limited, with HCPs having little knowledge or insight into optimal management strategies. Further work is being undertaken to explore these themes in other kidney diseases.
Funding
- Commercial Support – Omeros