Lived experiences of patients with calciphylaxis (CALCI-E): a qualitative study

Abstract Background Calciphylaxis is a rare, severe condition, mainly affecting people undergoing dialysis. It occurs when small arterioles within the skin become calcified causing painful skin lesions. There are currently no diagnostic tests or licensed treatments. This qualitative study explored patient experiences to identify opportunities to improve diagnosis and management of this challenging condition. Methods Participants were recruited between October 2023 and December 2024. A sample of 10–20 people was sought. Participants were eligible to take part if they lived in England or Wales and were over 18 years of age, had capacity to consent, and had a current or previous (<3 years) diagnosis of calciphylaxis, or were a caregiver (or relative) of someone with calciphylaxis. Interviews were recorded, transcribed and anonymised, and analysed using inductive, reflexive thematic analysis. Results Seventeen participants were recruited (14 patients, median age 68 years, 43% male; 3 relatives). Six overarching themes were identified. 1 Diagnostic Delays and Awareness Gaps; symptoms were often dismissed; 2 Pain and Symptom Experience; pain was frequently poorly managed; 3 Treatment and Medication Burden; severe side effects and very limited treatment explanation; 4 Wound Care Variability; often negative experiences and inconsistent practices; 5 Support and Psychological Impact; lack of emotional and practical support; 6 Patient Recommendations; better communication, education, and knowledge sharing. Conclusion This first in-depth thematic analysis of the experiences of patients who developed calciphylaxis identified key priorities: improved patient/clinician education, better pain and wound management, and enhanced psychosocial and peer support. These findings should inform clinical pathways, educational tools, and support services, with further co-produced research to assess their impact. The study highlights the value of the patients’ voices, their willingness to engage, and the need for patient experience measures in calciphylaxis and other rare diseases.