Calciphylaxis: what can we learn from patient experiences?
Professor Smeeta Sinha and Dr Sharon Huish have been awarded £27,000 funding from Kidney Research UK and Kidney Wales to learn more about patient views on a condition called calciphylaxis , a rare but devastating disorder found in some dialysis patients.
The problem
Calciphylaxis is a rare yet serious condition most commonly seen in people having dialysis (estimated to effect less than 1% of dialysis patients per year). Sadly, around 5 in 10 people diagnosed will die within 12 months.
Calciphylaxis happens when small blood vessels in and around the skin become blocked by a build-up of phosphate and calcium. This causes painful skin ulcers which can lead to serious infections. There is currently no specific treatment shown to work, although frequent dialysis (as much as daily) is commonly recommended. This approach can be a particular burden for patients who are likely to be in pain, unwell, and may be struggling emotionally.
Research into calciphylaxis is important and is underway to better understand the condition and to develop treatments, but there is still much work to be done in relation to patient experiences.
The solution
Working as part of Professor Sinha’s team, Dr Huish will conduct in-depth interviews of people with calciphylaxis, their families and carers to better understand the lived experience of this condition. Specifically, the research study will investigate how people felt about their diagnosis, experience of treatments, and interaction with healthcare teams. They will investigate what support was offered to those with calciphylaxis and identify areas requiring improvement.
“This research is so important. Calciphylaxis is a devastating condition and this study is about listening to, and learning from, patients so that we can better understand their needs, to know what would help them. The knowledge generated from this research will be used to guide care, and resources, to better support patients diagnosed with calciphylaxis."
Dr Sharon Huish - team lead renal dietitian.
What this means for kidney patients
Through this work Professor Sinha and Dr Huish aim to improve care for those with calciphylaxis and to increase awareness. Additionally, they aim to standardise patient information on calciphylaxis, helping all patients to have a more positive experience around diagnosis and management.
New information will be designed to be accessible to different patient groups, with content based on the experiences and needs of those living with calciphylaxis.
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