1. Underreported use of palliative care and patient-reported outcome measures to address reduced quality of life in patients with calciphylaxis: a systematic review
- Author
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Rokea A. el-Azhary, Jacob J. Strand, Kelly L. Wu, Julia S. Lehman, and Christie A. Riemer
- Subjects
Research design ,medicine.medical_specialty ,Palliative care ,Visual analogue scale ,Dermatology ,Subspecialty ,030207 dermatology & venereal diseases ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,medicine ,Humans ,Patient Reported Outcome Measures ,030212 general & internal medicine ,Calciphylaxis ,business.industry ,Palliative Care ,medicine.disease ,Systematic review ,Research Design ,Quality of Life ,Physical therapy ,Patient-reported outcome ,business ,Facilities and Services Utilization - Abstract
Calciphylaxis is associated with significant morbidity and mortality. Palliative care (PC) is a subspecialty that treats the pain and stress of serious illness. To assess whether the role of quality of life (QoL) indices, patient-reported outcome measures and PC have been studied in patients with calciphylaxis, we performed a systematic literature review. Several databases were searched from inception to October 2016 according to modified Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. We searched for papers on 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 the 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. One paper used a verified QoL measure, the Dermatology Quality of Life Index. No tool was used consistently. Eight papers reported the use of hospice care 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. PC may be a resource to assist in symptom management and adaptive coping strategies for patients from the onset of disease.
- Published
- 2017