Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/128243
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Type: Journal article
Title: Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals
Author: Natale, P.
Gutman, T.
Howell, M.
Dansie, K.
Hawley, C.M.
Cho, Y.
Viecelli, A.K.
Craig, J.C.
Jesudason, S.
Chapman, J.R.
Johnson, D.W.
Murphy, L.
Reidlinger, D.
Crowe, S.
Duncanson, E.
Muthuramalingam, S.
Scholes-Robertson, N.
Williamson, A.
McDonald, S.
Wong, G.
et al.
Citation: Nephrol Dial Transplant, 2020; 35(5):755-764
Publisher: Oxford University Press
Issue Date: 2020
ISSN: 0931-0509
1460-2385
Statement of
Responsibility: 
Patrizia Natale, Talia Gutman, Martin Howell ... Emily Duncanson ... Shilpanjali Jesudason ... Stephen McDonald ... et al.
Abstract: BACKGROUND: Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational. METHODS: We conducted three workshops involving 105 patients/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease. RESULTS: We identified four themes. 'Navigating the unknown'-patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. 'Wary of added burden'-patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. 'Disillusioned and disconnected'-some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed 'Building motivation and interest'. CONCLUSIONS: Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.
Keywords: chronic kidney disease; clinical trials; patient recruitment; patient retention; research
Rights: © The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
RMID: 1000018555
DOI: 10.1093/ndt/gfaa044
Grant ID: http://purl.org/au-research/grants/nhmrc/1092957
http://purl.org/au-research/grants/nhmrc/1106716
http://purl.org/au-research/grants/nhmrc/1092957
http://purl.org/au-research/grants/nhmrc/1126256
http://purl.org/au-research/grants/nhmrc/1117534
Appears in Collections:Medicine publications

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