About the 2019 International Guideline (3rd edition)
Accessing the 2019 Guideline (3rd edition)
The full Clinical Practice Guideline (CPG) includes the evidence-based recommendations and good practice statements, together with implementation considerations, evidence summaries and evidence discussion. The CPG is out of print excepting for legal purposes, but still available as a free download.
The Quick Reference Guide (QRG) is designed for busy health professionals. The QRG is not intended for use in isolation from the CPG but provides a quick summary of the evidence-based recommendations, good practice statements and quality indicators. The QRG is available as a free e-copy.
Review the Permissions for Use before using material in this guideline.
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2019 Methodology
The methodology was developed and published apriori. The published edition of the Guideline provides an abridged overview of the methods.
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2019 Consumer Engagment
The Methodology outlines a full strategy for promoting involvement of stakeholder and consumers. An international survey of patients and their informal caregivers was undertaken to establish information needs and care goal priorities). The survey informed recommendations on goals of care, quality of life, education and self-care and also informed the clinical questions, contributed to Evidence-to-decision Frameworks and informed the Strength of Recommendations.
Consumer survey publication (2022)
NPIAP Conference presentation (2019)
Guideline International Network Conference presentation (2018)
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Technical Documents
The technical documents include detailed information that underpins the development of the International Guideline and summarizes the information that supports the Guideline recommendations and content. This data built on the data from earlier editions of the guideline.
Evidence-to-Decision Frameworks
Conflict of Interest Declarations
Data tables from the first (2009) second edition (2014) of the International Guideline
Associate Organizations 2019
Associate Organizations with similar missions and values to the EPUAP/NPIAP/PPPIA participated in the development of the 2019 Guideline by nominating Small Working Group members and reviewing and endorsing the Guideline.
