Underreported use of palliative care and patient reported outcome measures to address reduced Quality of Life in calciphylaxis patients: A systematic review

Abstract

Calciphylaxis is associated with significant morbidity and mortality. Palliative care (PC) is a subspecialty that treats the pain and stress of serious illness. We performed a systematic review to assess whether quality of life (QoL) indices and the role of palliative care have been studied in calciphylaxis patients. We hypothesize PC services are underutilized to address reduced QoL in calciphylaxis. Several databases were searched from inception to October 2016 according to modified PRISMA criteria. We searched for papers about calciphylaxis that mentioned the symptoms and supportive needs of patients, QoL or outcome measures to report symptom severity, and the involvement of PC. Twelve papers met inclusion criteria. Reported patient symptoms included pain, skin lesion resolution, and pruritus, with the first being the most frequently reported. Four papers measured pain using a previously verified patient reported outcome measure, including the Visual Analogue Scale (VAS pain). One paper used a verified QoL measure, the Dermatology Quality of Life Index (DQLI). No tool was used consistently. Eight papers reported the use of hospice or PC in the treatment of calciphylaxis. No outcome measure was used to prompt PC involvement. Overall, QoL indices, patient reported outcome measures, and PC are underreported in the treatment of calciphylaxis. Because dermatologists are frequently involved in calciphylaxis patient care, and symptoms can present significant challenges to clinical practice, we aim to raise clinician awareness of PC as a resource to assist in symptom management and adaptive coping strategies for patients from the onset of disease.

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