Patient-reported outcomes for trials in kidney disease – from protocols to reporting

Patient-reported outcomes for trials in kidney disease – from protocols to reporting

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Time and Date: February 2020

Venue: Holme Building, The University of Sydney

Facilitators: Dr Angela Ju, Dr Martin Howell and Prof Kirsten Howard

Cost: $180 standard, $80 students, $0 patients/caregivers research partners (includes catering and materials)

Registration:

Program: The detailed program will be available soon.

There is wide recognition that trials need to measure and report outcomes that are meaningful and important to patients to inform decision-making. This is particularly relevant in kidney disease as the course of kidney disease and the many interventions impact on physical function and psychosocial wellbeing. Patient-reported outcome measures (PROMs) are used in trials to provide quantitative scores of how participants feel or function and whether there are changes (good or bad) as a result of the intervention. Regulatory bodies are increasingly mandating the use of PROMs in trials. There are hundreds of PROMS measuring many different aspects of well-being or quality of life. Selecting the most appropriate PROM for a given intervention is challenging, however as with any study outcome it is a critical aspect of development of a trial protocol. This short workshop aims to demystify PROMS and provide guidance as to best practice approaches for selecting, analysing and reporting PROMs in trials.

The objectives of this workshop are to:

– understand relevant concepts and terminology: ‘QOL’, ‘PROs’, ‘PROMs’, ‘PREMs’, ‘validated’

– recognise the importance of having the ‘right’ PROs and PROMs for your research question

– outline practical considerations for selecting PROs and measure

– gain knowledge in how to use PROMs in a trial

– learn how to interpret the results of PROMs

– understand minimal clinical important difference (MCID)

– discuss the application and value of PROMs in trial-related contexts (registries)

– understand how PROMs can be used in economic evaluations

Contact: For more information, please contact Angela Ju angela.ju@sydney.edu.au

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