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Randomized Controlled Trial
. 2017 May 1;32(5):847-854.
doi: 10.1093/ndt/gfw065.

Determining the research priorities for patients with chronic kidney disease not on dialysis

Brenda R Hemmelgarn  1   2 , Neesh Pannu  3 , Sofia B Ahmed  2 , Meghan J Elliott  4 , Helen Tam-Tham  2 , Erin Lillie  5 , Sharon E Straus  5   6 , Maoliosa Donald  1 , Lianne Barnieh  1 , George C Chong  7 , David R Hillier  8 , Kate T Huffman  9 , Andrew C Lei  8 , Berlene V Villanueva  10 , Donna M Young  11 , Elisabeth A Fowler  12 , Braden J Manns  1   2 , Andreas Laupacis  5   6
Affiliations
Randomized Controlled Trial

Determining the research priorities for patients with chronic kidney disease not on dialysis

Brenda R Hemmelgarn et al. Nephrol Dial Transplant. .

Abstract

Background: The importance of engaging key stakeholders, and patients in particular, in determining research priorities has been recognized. We sought to identify the top 10 research priorities for patients with non-dialysis chronic kidney disease (CKD), their caregivers, and the clinicians and policy-makers involved in their care.

Methods: We used the four-step James Lind Alliance process to establish the top 10 research priorities. A national survey of patients with non-dialysis CKD (estimated glomerular filtration rate <45 mL/min/1.73 m 2 ), their caregivers, and the clinicians and policy-makers involved in their care was conducted to identify research uncertainties. A Steering Group of patients, caregivers, clinicians and researchers combined and reduced these uncertainties to 30 through a series of iterations. Finally, a workshop with participants from across Canada (12 patients, 6 caregivers, 3 physicians, 2 nurses, 1 pharmacist and 1 policy-maker) was held to determine the top 10 research priorities, using a nominal group technique.

Results: Overall, 439 individuals responded to the survey and identified 1811 uncertainties, from which the steering group determined the top 30 uncertainties to be considered at the workshop. The top 10 research uncertainties prioritized at the workshop included questions about treatments to prevent progression of kidney disease (including diet) and to treat symptoms of CKD, provider- and patient-targeted strategies for managing CKD, the impact of lifestyle on disease progression, harmful effects of medications on disease progression, optimal strategies for treatment of cardiovascular disease in CKD and for early identification of kidney disease, and strategies for equitable access to care for patients with CKD.

Conclusions: We identified the top 10 research priorities for patients with CKD that can be used to guide researchers, as well as inform funders of health-care research.

Keywords: CKD; patient preferences; research priorities.

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Figures

FIGURE 1
FIGURE 1
Overall process for establishing top research uncertainties.
See this image and copyright information in PMC

References

    1. Weiss NS, Koepsell TD, Psaty BM. Generalizability of the results of randomized trials. Arch Int Med 2008; 168: 133–135 - PubMed
    1. Liberati A. Need to realign patient-oriented and commercial and academic research. Lancet 2011; 378: 1777–1778 - PubMed
    1. Petit-Zeman S, Firkins L, Scadding JW. The James Lind Alliance: tackling research mismatches. Lancet 2010; 376: 667–669 - PubMed
    1. Luce BR, Kramer JM, Goodman SN et al. . Rethinking randomized clinical trials for comparative effectiveness research: the need for transformational change. Ann Intern Med 2009; 151: 206–209 - PubMed
    1. Brett J, Staniszewska S, Mockford C et al. . Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2014; 17: 637–650 - PMC - PubMed

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