Navigating the patient-provider relationship during severe illness with lessons from a qualitative perspective of...

Calciphylaxis is a condition with unpredictable onset that predominantly affects people with kidney disease. This rare, incredibly painful condition results in necrotic skin lesions caused by calcified occlusions of the microvasculature and has an average one-year mortality rate of 50%. There is no cure for calciphylaxis, and treatment primarily focuses on symptom management. We sought to understand the lived experience of calciphylaxis. This qualitative study utilized semi-structured, phenomenological interviewing. We created a code table in which primary codes were analyzed from the biopsychosocial perspective from which overarching domains of experience were identified. Our sample consisted of 15 outpatient participants: 9 were in remission from calciphylaxis while 6 had active disease. Twelve participants were women while 3 were male. Participants ages ranged from 38 - 80 (mean 59). The calciphylaxis patient experience was characterized by severe pain, a lack of adequate pain management, limited calciphylaxis literacy among providers, and complicated interpersonal relationships with family, friends, and medical providers. Calciphylaxis is a life-altering condition characterized by severe pain and uncertainty on multiple fronts. This study demonstrates that clinical management of rare, severe illnesses, such as calciphylaxis, requires clear, honest provider-patient communication, sufficient provider and patient education, adequate symptom management, and empathy.