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Patients should have a say in setting research priorities, new paper says

Toronto, May 15, 2014

Dr. Andreas Laupacis
Dr. Andreas Laupacis

As part of the growing emphasis on patient-centred health care, patients and their caregivers should have a voice in setting priorities for medical research, a group of researchers said in a paper published today.

Since patients live with a disease, their priorities are often different than those of researchers, and they may have different views on how to measure outcomes, the researchers said.

The researchers, led by Dr. Braden Manns and Brenda Hemmelgarn from the University of Calgary and Dr. Andreas Laupacis of St. Michael’s Hospital in Toronto, surveyed patients with kidney failure who were on or approaching dialysis, their caregivers and health care professionals from across the country to determine their top research priorities. The researchers then met with 34 patients, caregivers and clinicians in Toronto to assemble their Top 10 list.

Their results were published online today in the clinical Journal of the American Society of Nephrology.

“We’ve never asked patients what research questions they felt were most important,” said Dr. Manns, who is member of the Institute for Public Health and Libin Cardiovascular Institute of Alberta. “Perhaps not surprisingly, what they thought didn’t necessarily coincide with what we as researchers thought was most important. Hopefully this will influence the kinds of studies that get conducted over the coming years.”

Doctors say patients may also have different views than researchers on how to measure the success of research. Trials on treatments for rheumatoid arthritis, for example, used pain to measure outcomes, but patients said fatigue was also an important measure for them.

“Because they live with their disease, people with kidney failure and their caregivers become experts in their disease,” said Dr. Laupacis, executive director of the Li Ka Shing Research Institute of St. Michael’s.

The researchers used, for the first time in Canada, a method developed by the James Lind Alliance in Britain to identify the most important unanswered questions (or uncertainties) about the management of kidney failure. They received 1,820 uncertainties from 317 respondents.

The top uncertainty was around how to enhance communication between health care professionals and patients and to maximize patient participation in decision-making with regards to the advantages and disadvantages of different forms of dialysis and access to test results to facilitate self-management.

Of the survey respondents, 54.6 per cent were patients, 12 per cent were caregivers and 34 per cent were health care professionals who look after people with kidney failure. The majority of patients were on in-hospital hemodialysis (53 per cent). Most respondents (75 per cent) were from Western Canada or Ontario (75 per cent) and 48.4 per cent of patient respondents were between the ages of 50 and 69, similar to the average age of people starting dialysis in Canada (63).

The research was funded by Kidney Foundation of Canada, Alberta Innovates – Health Solutions, and Canadian Institutes for Health Research.

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List of the Top 10 uncertainties:

  1. What is the best way to enhance communication between health care professionals and patients and to maximize patient participation in decision-making with regards to the advantages and disadvantages of different forms of dialysis, and access to test results to facilitate self-management?

  2. How do different dialysis modalities compare in terms of their impact on quality of life, mortality and patient acceptability, and are there specific patient factors that make one modality better for some patients with kidney failure than others?

  3. What are the causes and effective treatment(s) of, and ways to prevent, itching in dialysis patients?

  4. What is the best strategy to increase kidney transplantation; including access to transplantation, increasing the efficiency of the recipient workup, and increasing the availability of donor kidneys?

  5. What is the psychological and social impact of kidney failure on patients, their family, and other caregivers, and can this be reduced?

  6. What are the best ways to promote heart health in dialysis patients, including management of blood pressure?

  7. For people with kidney failure, what is the impact of each of the dietary restrictions (sodium, potassium, phosphate) separately, and when taken in combination, on important outcomes including quality of life?

  8. What are the best ways to manage symptoms in people on or nearing dialysis including poor energy, nausea, cramping, and restless legs?

  9. What are the causes and effective treatment(s) of depression in dialysis patients?

  10. What is the best vascular access (among both new and existing types of access) for people on hemodialysis?

About St. Michael's Hospital

St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in 27 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael's Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.

Media contacts

For more information, or to arrange an interview with Dr. Andreas Laupacis, contact:

Leslie Shepherd
Manager, Media Strategy
416-864-6094
shepherdl@smh.ca