Many Kidney Disease Researchers Aren’t Focusing Enough on Patients, New Study Shows

AUSTIN, TX — April 11, 2018— Many kidney disease researchers should consider dramatically increasing both their engagement of patients with kidney disease and the amount of their research that is focused on patient-centered outcomes, according to the authors of a study whose major findings will be presented at the National Kidney Foundation 2018 Spring Clinical Meetings in Austin, Texas.

 

The study, based on the results of an online survey of more than 1,500 individuals, including 657 kidney disease researchers, showed that nearly three-quarters of the researchers have never pursued patient-centered outcomes research.

 

The survey also revealed that almost one-half (46.8%) of the surveyed researchers publish only in academic journals, while failing to present results in venues more accessible to kidney disease patients. Of 860 patients and family members surveyed, nearly 9 out of every 10 (89.1%) expressed interest in being involved in such studies but had not yet been involved in them.

 

“Getting patients engaged early in research will help insure the data, device, or drug is meaningful to patients and patients are willing use it,” said Teri Browne, Ph.D., a researcher at the College of Social Work at the University of South Carolina and lead author of the study.

 

Browne conducted the study in partnership with Derek Forfang, a kidney disease patient and a long-time kidney disease advocate.

 

Patient-centered outcomes research aims to help patients and their family members suggest research topics important to them, create research questions and outcomes in partnership with researchers, and fully participate in all aspects of research projects. It also involves patients and family members in the translation of the research findings to other patients, professionals, and communities.

 

In their study, Browne and the authors found that patients and care partners also specified that future research should prioritize studies which improve understanding of the biology of kidney disease and ways to prevent it. The most common barriers to patient engagement mentioned by researchers who were surveyed included difficulty doing research in dialysis centers, lack of funding for patient engagement within projects, and lack of knowledge of how to best engage with patients.

 

Barriers to research involvement cited by patients included travel limitations, lack of motivation, limited understanding of research, and lack of awareness of research opportunities. The study — which also includes authors from the non-profit organizations the National Forum of ESRD Networks and the National Kidney Foundation — has been accepted for publication in the American Journal of Kidney Diseases.

 

For the past 27 years, nephrology healthcare professionals from across the country have come to NKF’s Spring Clinical Meetings to learn about the newest developments related to all aspects of nephrology practice; network with colleagues; and present their research findings. The NKF Spring Clinical Meetings are designed for meaningful change in the multidisciplinary healthcare teams’ skills, performance, and patient health outcomes. It is the only conference of its kind that focuses on translating science into practice for the entire healthcare team. 

 

30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end-stage renal disease (kidney failure).