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Trials with proxy-reported outcomes registered on the Australian New Zealand Clinical Trials Registry (ANZCTR)

Mercieca Bebber, R, Williams, D, Tait, MA, Rutherford, C, Busija, L, Roberts, N, Wilson, M, Sundaram, CS and Roydhouse, J 2019 , 'Trials with proxy-reported outcomes registered on the Australian New Zealand Clinical Trials Registry (ANZCTR)' , Quality of Life Research, vol. 28 , 955–962 , doi: 10.1007/s11136-018-2080-4.

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Aims A proxy is someone other than a patient who reports a patient’s outcomes as if they are the patient. Due to knowndiscordance with patient reports, proxies are often not recommended in clinical trials; however, proxies may be needed incertain research contexts. We aimed to identify and describe trials registered on the Australian New Zealand Clinical TrialsRegistry (ANZCTR) with proxy-reported endpoints.Methods ANZCTR was systematically searched from inception (2005) to 31 March 2017 for trials with proxy-reportedendpoints. Primary and secondary endpoints for each trial retrieved by the search were individually coded (proxy-reported:yes/no), and trials with confirmed proxy-reported endpoints were included in the analysis.Results Of 13,666 registered trials, 469 (3.4%) included a proxy-reported endpoint (867 individual proxy-reported endpointsin total: 62% family member proxy, 22% health professional). Proxy endpoint inclusion did not significantly increase overtime (r=0.18, p=0.59). Mental health (11.5%), stroke (10.3%) and neurological (8.3%) trials had the highest proportion oftrials using proxies. Of the 469 trials, 123 (26.2%) studies involved paediatric patients.Discussion Proxy-reported endpoints are included in a small but notable number of studies, which may indicate other typesof outcomes are used for patients unable to self-report, or that these patients are under-researched.

Item Type: Article
Authors/Creators:Mercieca Bebber, R and Williams, D and Tait, MA and Rutherford, C and Busija, L and Roberts, N and Wilson, M and Sundaram, CS and Roydhouse, J
Keywords: clinical trial, proxy, outcomes
Journal or Publication Title: Quality of Life Research
Publisher: Springer Netherlands
ISSN: 1573-2649
DOI / ID Number: 10.1007/s11136-018-2080-4
Copyright Information:

© Springer Nature Switzerland AG 2018

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