title: Assessing the extent to which current clinical research is consistent with patient priorities: a scoping review using a case study in patients on or nearing dialysis.
abstract: OBJECTIVE
  There is growing acknowledgement that engaging patients to identify their research priorities is important. Using a case study of patients on or nearing dialysis, we sought to assess the extent to which recently completed and ongoing clinical research was consistent with priorities identified by patients, caregivers, and clinicians.
  
  
  METHODS
  Over a 4-year sampling frame (January 2010 to December 2013), we systematically searched the medical literature (top 5 nephrology and top 10 general medicine journals accessed through MEDLINE via Ovid), international randomized controlled trial (RCT) registries, and national government and kidney research funding organizations (Canada, U.S., Australia, and U.K.) for published clinical studies, registered RCTs, and funded clinical studies, respectively. Published clinical studies, registered RCTs, and funded clinical studies were categorized as to whether or not they were consistent with the top 10 research priorities identified by patients, their caregivers, and clinicians in a recent comprehensive research priority setting exercise.
  
  
  RESULTS
  The search yielded 4293 published articles, 688 RCTs, and 70 funded studies, of which 1116 articles, 315 RCTs, and 70 funded studies were eligible for inclusion. Overall 194 published studies (17.4 %), 71 RCTs (22.5 %), and 15 funded studies (21.4 %) included topics consistent with the top 10 research priorities identified by patients. Four of the top 10 research priorities, including strategies to improve the management of itching, increase access to kidney transplantation, assess the psychosocial impact of kidney failure, and determine the effects of dietary restriction received virtually no attention.
  
  
  CONCLUSIONS
  The top 10 priorities we used to categorize included studies were identified by Canadian patients, caregivers, and clinicians. The top research priorities may vary across different countries. The proportion of published studies that are consistent with the top 10 priorities could be different in nephrology journals with lower impact factors. Studies related to kidney transplantation and the psychosocial impact of kidney failure may have been published in journals not included in our search strategy.
  
  
  CONCLUSIONS
  The majority of recently completed or ongoing clinical studies in patients on or nearing dialysis do not address the top research priorities of patients, raising concerns that current clinical research may not be meeting the needs of the ultimate consumer, in this case, patients on or nearing dialysis. Greater involvement of patients in research is required to bridge the gap between research and patients' needs.
authors.affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada.
authors.forename: Min
authors.initials: M
authors.lastname: Jun
authors.affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada ; Department of Community Health Sciences, University of Calgary, Calgary, AB Canada.
authors.forename: Braden
authors.initials: B
authors.lastname: Manns
authors.affiliation: Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, ON Canada ; Faculty of Medicine, University of Toronto, Toronto, ON Canada.
authors.forename: Andreas
authors.initials: A
authors.lastname: Laupacis
authors.affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada.
authors.forename: Liam
authors.initials: L
authors.lastname: Manns
authors.affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada.
authors.forename: Bhavdeep
authors.initials: B
authors.lastname: Rehal
authors.affiliation: Oxford, UK.
authors.forename: Sally
authors.initials: S
authors.lastname: Crowe
authors.affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada ; Department of Community Health Sciences, University of Calgary, Calgary, AB Canada.
authors.forename: Brenda R
authors.initials: BR
authors.lastname: Hemmelgarn