#744 Calciphylaxis: a qualitative study of patient experiences

Abstract Background and Aims Calciphylaxis, or calcific uremic arteriolopathy (CUA), is a rare but devastating condition predominantly seen in people (with kidney failure) undergoing dialysis. It occurs when small arterioles within the skin become calcified causing painful skin lesions. Prevalence of calciphylaxis is reported to be 1–4% in end stage kidney disease with a reported mortality rate of 50–60% within a year of diagnosis. At present there are no diagnostic tests or licensed treatments and clinical management is largely informed by case series reports and small uncontrolled studies. This study aims to evaluate patient experiences of calciphylaxis diagnosis and treatment, to determine what occurs and what would help, for the benefit of i) informing and improving future patient care and ii) increasing awareness (earlier diagnosis). Method Ethical approval was received. The study was promoted to clinical care teams through the UK Kidney Association and UK Kidney Research Consortium, and directly to patients through Kidney Research UK and Kidney Wales. Inclusion criteria: ≥18 years of age and current or previous (<3 years) diagnosis of calciphylaxis, or carer/relative of someone with calciphylaxis. Study information was sent remotely by the research team and informed consent was undertaken by telephone or in person. Research interviews were conducted in-person, via video call or telephone. The recruitment target was 10-20 people to ensure data saturation was achieved (new participant repeats previous information and no new information is obtained). Interviews were transcribed (anonymised) and inductive thematic analysis is currently underway. Results Recruitment was open from October 2023 to December 2024 inclusive. 19 people living in England and Wales were approached and sent participant information sheets. 12 of 19 (63%) were identified by their clinical care team and 7 of 19 (37%) self-initiated participation in response to a study advert. 17 of 19 (89%) consented to participate (14 of whom were patients with current or previous calciphylaxis and 3 were relatives of calciphylaxis patients). The median patient age was 68 years (range 52-82) and 43% (6 of 14) were male. 1 patient withdrew from the study prior to interview (due to ill health). 16 interviews were successfully undertaken; 10 in person, 5 via video call, and 1 over the telephone. The average interview duration was 49 minutes (range 15–81 minutes). Theme saturation was achieved. Participants described the importance (and helpfulness) of continuity in wound care management/dressings, feeling informed, being given ‘good news’ stories (not just bad), good pain control and clear communication. The reported challenges related to: the diagnosis itself (delays, how the diagnosis was delivered, and a lack of information for both patients themselves and their relatives), limited understanding about the condition, a lack of overall support, and feelings of fear. Conclusion Qualitative research in calciphylaxis, a rare and devastating condition, has been lacking. This study was well received, participants were welcoming of the research and keen to share their journey. Findings identified areas that can be developed to improve the experiences of people diagnosed with calciphylaxis (and their families). This includes developing: i) educational resources for both patients and their relatives, ii) a best practice quick reference guide for clinicians, and iii) a care card for primary care, targeted at district nurses, explaining what calciphylaxis is and best practice advice for wound care management. In a condition where there are no proven treatments and outcomes are poor, this study demonstrates the value of the patients’ voice in identifying areas of care that can be improved.