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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.

Jun M, Manns B, Laupacis A, Manns L, Rehal B, Crowe S, Hemmelgarn BR - Can J Kidney Health Dis (2015)

Bottom Line: 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.Abstract available from the publisher.

View Article: PubMed Central - PubMed

Affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada.

ABSTRACT

Purpose of review: 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.

Sources of information: 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.

Findings: 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.

Limitations: 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.

Implications: 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.

No MeSH data available.


Related in: MedlinePlus

a The proportion of eligible studies, by information source (published literature, RCT registry, and funding organizations), identified as addressing one of the top 10 research priorities compared to studies which did not assess one of the top 10 priorities, b Distribution of studies addressing one of the top 10 research priorities, by the top 10 dialysis patient priorities
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Fig2: a The proportion of eligible studies, by information source (published literature, RCT registry, and funding organizations), identified as addressing one of the top 10 research priorities compared to studies which did not assess one of the top 10 priorities, b Distribution of studies addressing one of the top 10 research priorities, by the top 10 dialysis patient priorities

Mentions: There was good agreement between the 2 reviewers for the categorization of published studies, registered RCTs, and studies identified through funding agencies according to the top 10 priorities (Kappa = 0.82, 0.97, 0.88, respectively). The proportion of studies that addressed the top 10 priorities was 17.4 % in the medical literature, 22.5 % in the RCT registries, and 21.4 % in the funding organizations (Table 3 and Fig. 2a). Among studies addressing 1 of the top 10 research priorities, strategies aimed at improving cardiovascular health in dialysis patients were the most common (Fig. 2b). Across the 3 sources, very few studies focused on itching, increasing access to kidney transplantation, assessing the effect of dietary restriction, or describing the psychosocial impact of kidney failure; none of the 70 studies supported by the funding organizations addressed these issues.Fig. 2


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.

Jun M, Manns B, Laupacis A, Manns L, Rehal B, Crowe S, Hemmelgarn BR - Can J Kidney Health Dis (2015)

a The proportion of eligible studies, by information source (published literature, RCT registry, and funding organizations), identified as addressing one of the top 10 research priorities compared to studies which did not assess one of the top 10 priorities, b Distribution of studies addressing one of the top 10 research priorities, by the top 10 dialysis patient priorities
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4590701&req=5

Fig2: a The proportion of eligible studies, by information source (published literature, RCT registry, and funding organizations), identified as addressing one of the top 10 research priorities compared to studies which did not assess one of the top 10 priorities, b Distribution of studies addressing one of the top 10 research priorities, by the top 10 dialysis patient priorities
Mentions: There was good agreement between the 2 reviewers for the categorization of published studies, registered RCTs, and studies identified through funding agencies according to the top 10 priorities (Kappa = 0.82, 0.97, 0.88, respectively). The proportion of studies that addressed the top 10 priorities was 17.4 % in the medical literature, 22.5 % in the RCT registries, and 21.4 % in the funding organizations (Table 3 and Fig. 2a). Among studies addressing 1 of the top 10 research priorities, strategies aimed at improving cardiovascular health in dialysis patients were the most common (Fig. 2b). Across the 3 sources, very few studies focused on itching, increasing access to kidney transplantation, assessing the effect of dietary restriction, or describing the psychosocial impact of kidney failure; none of the 70 studies supported by the funding organizations addressed these issues.Fig. 2

Bottom Line: 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.Abstract available from the publisher.

View Article: PubMed Central - PubMed

Affiliation: University of Calgary, Cumming School of Medicine, Division of Nephrology, Health Sciences Building, 3330 Hospital Drive NW, Calgary, T2N 4N1 AB Canada.

ABSTRACT

Purpose of review: 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.

Sources of information: 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.

Findings: 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.

Limitations: 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.

Implications: 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.

No MeSH data available.


Related in: MedlinePlus