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.
Lay Summary
Living with Calciphylaxis – A Study of Patient ExperiencesWhat is calciphylaxis?
Calciphylaxis is a very rare and serious condition that can affect people having dialysis. It causes painful skin wounds when tiny blood vessels in the skin become blocked by calcium products. Sadly, there are no official tests to diagnose this condition and there are no approved treatments yet.
Why was this study done?
This research listened to patients and relatives talk about their journeys with calciphylaxis – from diagnosis to treatment and support – to understand what could make care better.
Who took part?
• 16 people across England and Wales (13 patients, 3 relatives)
• Most were aged over 60 and were having dialysis
• Conversations with participants lasted around an hour each
What patients told us
1. Struggles to get diagnosed
Many people said their early symptoms were ignored or misdiagnosed. Some had to push for referrals themselves.
“One of the biggest problems was how many people had never heard of it… I had to push for everything.”
Even after diagnosis, explanations were often poor, leaving people confused and frightened.
“It would’ve been nice if somebody said do you want us to have a word with your family and explain…”
2. Pain and Symptoms
Pain was described as constant and severe. Some participants only received basic painkillers like paracetamol.
“The pain just dominates everything… it’s like you don’t get a respite.”
“They gave me paracetamol for pain that made me scream.”
3. Side effects and treatment burdenSome treatments caused strong side effects, and people were not always warned.
“They gave me [sodium thiosulphate] after dialysis… it makes me violently sick… it just keeps going and going.”
Patients also wanted to hear survivor stories to balance the fear of death with hope.
“He [the doctor] said in our centre three people had had this condition… that gave me hope.”
4. Wound care challengesDressing changes could be very painful and varied depending on who was providing care.
“Every time I got the dressings changed I was in extreme pain.”
“You worry yourself sick with who is coming on duty the next day.”
5. Emotional toll and lack of support
People spoke of fear, isolation, and the absence of psychological help. Small acts of kindness from staff made a huge difference.
“When you don’t know what’s happening, you have no hope.”
“The nurse made my coffee how I like it. That meant more than any drug.”
6. Patients recommendationsPatients felt the following would have helped:
• Clear, compassionate explanations about their condition and treatments
• More knowledgeable professionals and joined-up care between healthcare teams
• Pain experts involved in their care
• Emotional and peer support; including the option of a patient group and knowing survivor stories
Why does this matter? (Discussion)
This study shows that while calciphylaxis is rare and difficult to treat, there are immediate changes that could improve care:
• Better awareness and education could reduce delays in diagnosis and stop patients from feeling dismissed.
• Stronger pain management could be provided to offer more comfort and improve day to day quality of life
• Joined-up care pathways would avoid confusion and inconsistency, particularly for wound care.
• Emotional and peer support could reduce fear and isolation, and give people hope.
Importantly, this research highlights the value of the patient voice in shaping future services. Patients were clear about what needs to change, and their insights provide a roadmap for better care.
Next steps
Our research group are now developing educational resources for both clinicians and patients about calciphylaxis. These will aim to:
• Improve professional knowledge and awareness
• Provide patients and families with clear, compassionate educational information
• Share survivor stories and practical advice
• Support more consistent approaches to care
Take home message
Patients with calciphylaxis often face delays in getting a diagnosis, and can have severe under-treated pain as well as variable wound care, and a lack of emotional support. Their voices have offered ideas to provide supportive solutions – and encouragingly, work is now starting to put these ideas into practice through new resources for patients and healthcare teams.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