How can we improve care for people living with calciphylaxis?

New research has been published in the Journal of Nephrology, led by Dr Sharon Huish and Professor Smeeta Sinha. The study, jointly funded by Kidney Wales & Kidney Research UK, has provided new insights from calciphylaxis patients on their experiences of receiving a diagnosis and their care. These are used to make recommendations to improve care for these patients.

A link to the journal can be found here; Lived experiences of patients with calciphylaxis (CALCI-E): a qualitative study | Journal of Nephrology | Oxford Academic

What is calciphylaxis?

Calciphylaxis is a rare and severe condition mostly seen in people with kidney disease on dialysis. It happens when tiny blood vessels in the skin become blocked by calcium products. This is a process known as ‘calcification’. As a result, the skin and underlying tissues do not receive enough blood flow, which leads to painful skin ulcers that often become infected. There are currently no diagnostic tests for calciphylaxis and no approved treatments.

Listening to the patient voice to improve care

To better understand the experiences of patients with calciphylaxis, 16 interviews with people who have had, or are a relative of someone who has had, calciphylaxis were held. Interviewees spoke about their experience of diagnosis, care and any support they received, explaining what they found helpful and challenging, and anything they felt could have improved their experience.

“Listening to the patient voice is key to understanding how we can improve care. We are using the outcomes of our research to make changes that we hope will improve the lives of patients living with calciphylaxis.” Professor Smeeta Sinha

Getting a diagnosis can be difficult

Participants reported that there was a lack of knowledge about calciphylaxis among healthcare professionals. This meant early symptoms often weren’t recognised, with patients needing to ask their doctors for investigations to be done, or for referrals to specialists. This often meant a long time for patients to get a diagnosis. However, patients who saw nephrologists early, or who had previous knowledge of calciphylaxis, generally got a quicker diagnosis and had a better experience.

Following diagnosis, some participants said they had little or no explanation of their condition, its causes, and how it could impact them. Written information often wasn’t patient friendly and could be difficult to understand. This made it challenging for patients to understand their condition and how it could impact their health.

Extreme pain was often not managed well 

Participants reported the ongoing extreme pain of the condition was often not managed well by their healthcare team. Pain relief for some patients was not strong enough for the intensity of pain, with one participant saying “they gave me paracetamol for pain that made me scream”.

Inconsistent wound care created fear and worry

Wound care, such as dressings, can be very painful for people with calciphylaxis. Participants experienced differences in wound care amongst healthcare professionals, which led to fear and worry of who would be changing their dressings. However, for some participants, advice provided by tissue viability services, with specialised knowledge in wound management, improved their experience.

Treatments had side effects patients felt unprepared for

Certain treatments for calciphylaxis can have side effects, for example one participant had violent sickness. Treatments weren’t always explained well to patients by their doctors, which led to patients feeling underprepared for any side effects.

Better support is needed after diagnosis

Calciphylaxis can have a big emotional and psychological impact on patients, as well as the physical symptoms. Many participants felt fear, uncertainty and isolation following diagnosis. Some participants said that they could have received better support for the psychological impact of their diagnosis. Those participants that accessed support independently, such as through kidney charities or local hospice services, found this helpful. Some patients found hearing about other patients who have had calciphylaxis valuable for giving them hope for recovery.

How can care be improved for calciphylaxis patients?

Sharon, Smeeta, and the team identified several key priorities to inform improvements in calciphylaxis care. This included better education on the condition for patients and healthcare professionals. They also identified improvements needed in pain management and wound care for calciphylaxis. Lastly, more support is needed for patients on the emotional and psychological impact of the condition.

“We are using the outcomes from this research to develop new resources. For example, we are developing a new video and care guide to provide patients and healthcare professionals with information on calciphylaxis so they can better understand the condition. We are also making a new wound care guide, which we hope can make wound care consistently better and less painful for calciphylaxis patients. We hope these resources help to improve care and the lives of our patients.” Dr Sharon Huish