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Kidney Week

Abstract: TH-PO138

Patients' Experience of Calciphylaxis: Living with a Disease of Uncertain Etiology and Management

Session Information

Category: Bone and Mineral Metabolism

  • 502 Bone and Mineral Metabolism: Clinical

Authors

  • Durant, Olivia, Massachusetts General Hospital, Boston, Massachusetts, United States
  • Salhi, Carmel, Northeastern University Bouve College of Health Sciences, Boston, Massachusetts, United States
  • Nigwekar, Sagar U., Massachusetts General Hospital, Boston, Massachusetts, United States

Group or Team Name

  • Kidney Research Center.
Background

Calciphylaxis is a condition with sudden, unpredictable onset that predominantly affects people with end-stage renal disease (ESRD). Caused by the calcium-based occlusion of the microvasculature, calciphylaxis results in large, extremely painful non-healing skin ulcers. Calciphylaxis has no cure and a one-year mortality between 40 and 80% for patients who have ESRD. Prior research has focused on identifying the biological mechanisms of the disease with the goal of developing treatment. Little is known about how patients currently living with calciphylaxis manage their illness and care, especially regarding the treatment options and severe, often debilitating, symptoms.

Methods

Using purposive sampling, we recruited participants (n=15) who had contact with a calciphylaxis clinical practice in the Northeast United States. This qualitative study utilized semi-structured phenomenological interviews to investigate the lived experience of patients with calciphylaxis. These 1-hour interviews focused on specific domains of patients’ experience: process to diagnosis, treatment process, and social and emotional support.

Results

There were 5 major findings of this study: 1) unpredictability resulting from acuity of disease and uncertain clinical diagnosis and treatment options; 2) severity of pain affecting basic functioning and access to clinical care; 3) central role of social support due to the debilitating nature of pain; 4) coping and challenges of the disease; 5) becoming a self-advocate in the clinical setting in order to navigate clinical care. Two issues tie these findings together. A lack of clinical attention to pain management affected both daily functioning and patients’ ability to access other aspects of calciphylaxis care. Patients’ experiences of uncertainty were exacerbated by limited communication and lack of coherent calciphylaxis clinical knowledge.

Conclusion

Our findings are the first to describe, in depth, patients’ experiences with calciphylaxis. They inform various clinical recommendations, for both calciphylaxis and other conditions with acute, unpredictable onset and potentially debilitating symptoms. In particular, inclusion of pain management specialists as core members of a care team could improve the quality of life of calciphylaxis patients and help communicate the challenges patients face to other members of the care team.