Calci-E
Research type
Research Study
Full title
Calciphylaxis: a qualitative study of patient experiences
IRAS ID
326749
Contact name
Sharon Huish
Contact email
Sponsor organisation
Northern Care Alliance NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
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 calcium
products. This causes painful skin ulcers which can lead to serious infections. There is no specific treatment as yet that is shown to work. Frequent dialysis (as much as daily) is a common treatment. This is a burden for patients who are likely to be in pain, unwell, and may be struggling emotionally. Research into this condition is important. Previous studies have focused on identifying causes and treatment options. This study aims to explore experiences of patients (something overlooked in existing studies). People from across the UK with a current or previous diagnosis of calciphylaxis will be invited to take part in a research interview. Due to the rarity of the condition (expected small patient numbers) the experiences of families and carers may also be drawn on. Interviews will take place in person, on the phone or via video call. The conversation will be recorded, typed up (anonymised) and evaluated to identify common occurrences and suggestions. We plan to interview 10-20 people. The hope is to learn about 1) people’s experience of calciphylaxis diagnosis 2) the care and support they received 3) what would have helped. Results will be shared with both patients and healthcare professionals.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
23/PR/0708
Date of REC Opinion
18 Jul 2023
REC opinion
Further Information Favourable Opinion