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

Brenda R Hemmelgarn; Neesh Pannu; Sofia B Ahmed; Meghan J Elliott; Helen Tam-Tham; Erin Lillie; Sharon E Straus; Maoliosa Donald; Lianne Barnieh; George C Chong; David R Hillier; Kate T Huffman; Andrew C Lei; Berlene V Villanueva; Donna M Young; Elisabeth A Fowler; Braden J Manns; Andreas Laupacis

doi:10.1093/ndt/gfw065

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

Nephrol Dial Transplant. 2017 May 1;32(5):847-854. doi: 10.1093/ndt/gfw065.

Authors

Brenda R Hemmelgarn^{1

2}, Neesh Pannu³, Sofia B Ahmed², Meghan J Elliott⁴, Helen Tam-Tham², Erin Lillie⁵, Sharon E Straus^{5

6}, Maoliosa Donald¹, Lianne Barnieh¹, George C Chong⁷, David R Hillier⁸, Kate T Huffman⁹, Andrew C Lei⁸, Berlene V Villanueva¹⁰, Donna M Young¹¹, Elisabeth A Fowler¹², Braden J Manns^{1

2}, Andreas Laupacis^{5

6}

Affiliations

¹ Department of Medicine, University of Calgary, Calgary, AB, Canada.
² Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
³ Department of Medicine, University of Alberta, Edmonton, AB, Canada.
⁴ University of Toronto, Toronto, ON, Canada.
⁵ Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, ON, Canada.
⁶ Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁷ Calgary, AB, Canada.
⁸ Toronto, ON, Canada.
⁹ Vancouver, BC, Canada.
¹⁰ Winnipeg, MB, Canada.
¹¹ Halifax, NS, Canada.
¹² Kidney Foundation of Canada, Montreal, QC, Canada.

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.

Publication types

Randomized Controlled Trial

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Attitude of Health Personnel
Biomedical Research / trends*
Disease Progression
Female
Health Knowledge, Attitudes, Practice*
Health Priorities*
Humans
Male
Middle Aged
Patients / psychology*
Renal Dialysis*
Renal Insufficiency, Chronic / therapy*
Young Adult