The Development of an Online Palliative Care Toolkit for Cirrhosis

开发用于肝硬化的在线姑息治疗工具包

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Abstract

BACKGROUND: Liver cirrhosis carries high symptom burden and health care utilization. Palliative care (PC) has demonstrated improvements in symptom burden and overall quality of life. Despite this, PC remains underutilized in patients with chronic liver disease. As a step to bridge this gap, we developed cirrhosiscare.ca as an easy-to-access, evidence-, and expert consensus-based online PC resource for health care providers. METHODS: This short report describes the development of the health care practitioner 'Symptom Management' section of www.cirrhosiscare.ca, covering common symptoms (e.g., pain, pruritus, anxiety, depression, nausea/vomiting) experienced by patients with cirrhosis. A multidisciplinary team included representatives from hepatology, palliative care, pain management, psychiatry, pharmacy, and primary care. The project was carried out over four phases: Symptom selection, Material development, Website creation, and Feedback, revisions, and maintenance. RESULTS: The cirrhosiscare.ca website was launched to the public on March 15, 2021. Twelve detailed content pages were developed alongside four end-of-life algorithms. The developed pages have been well received, and there are between 10,000 and 12,000 new users on the site each month. CONCLUSIONS: The development of the cirrhosiscare.ca website is a digital strategy to increase awareness and access to evidence-based and expert consensus-based materials for PC. Ongoing dissemination and sustainability will include regular maintenance and updates to online content, links to inpatient care pathways, and incorporation within the Alberta one:carepath primary care initiative.

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