Determining Research Priorities in Adults with Chronic Kidney Disease and not on Dialysis

The importance of engaging key stakeholders, and patients in particular, in determining research priorities has been recognized.

From Dec 2014 to Feb 2015 a national survey of patients with non-dialysis CKD, caregivers, and the clinicians and policy-makers involved in their care, was conducted to determine the research priorities for adult patients with chronic kidney disease not on dialysis.

Overall, 439 individuals from across Canada responded to the survey and identified 1,811 uncertainties, from which the Steering Group determined the top 30 uncertainties to be considered further at a 1-day workshop in Toronto. At the workshop patients, caregivers, and health care providers from across Canada worked collaboratively to finalize the top 10 uncertainties of greatest importance to patients with CKD.

Download the Final Report Summary (PDF)

Below is the list of the top 10 research uncertainties prioritized at the workshop:

1. What are the most effective new interventions and treatments to prevent the development and progression of kidney disease?

2. What is the best diet to slow progression of kidney disease and what are the benefits and risks of specific diets (i.e. phosphate restriction, protein restriction, low salt etc.) in terms of kidney disease progression and quality of life?

3. What are the causes of symptoms in patients with chronic kidney disease, including fatigue, low energy, sleeping problems, depression, anxiety and sexual dysfunction, and how can these best be treated to improve quality of life?

4. What are the optimal strategies, such as having access to health information (e.g. lab test results), sharing of information, and/or improving communication, to help patients manage their health condition(s) themselves and to improve patient experience and outcomes.

5. What is the impact of lifestyle factors (i.e. exercise, stress) on risk of developing kidney disease, kidney disease progression and quality of life?

6. What are the optimal strategies for the management of CKD (i.e. those undertaken by the primary care physician, nephrologist, other health care professionals) to delay progression and improve outcomes?

7. What are the harmful effects of medications used in patients with CKD, and in particular the combinations of medications used to treat other diseases (such as diabetes and high blood pressure)?

8. What are the optimal approaches for the prevention and treatment of cardiovascular disease in patients with CKD?

9. What is the best strategy (e.g. screening, programs targeting high risk groups, programs to increase public awareness) to identify kidney disease early?

10. How do we ensure that patients with CKD have equitable access to care (e.g. nephrologists, allied health clinics) irrespective of location of residence or socio-economic status?

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