Renal Patient and Provider Perspectives on
Kidney Disease and Anemia
About the surveys
Anemia is a common complication of chronic kidney disease (CKD) and can worsen as the disease progresses. In fact, most people on dialysis have anemia (NIDDK).
As part of our mission to help people with kidney disease live healthier lives, the American Kidney Fund (AKF) has focused numerous education and outreach efforts on the connection between anemia and kidney disease through our ongoing ACT on Anemia campaign. ACT on Anemia seeks to raise awareness about anemia as a common condition among those with CKD and kidney failure by providing engaging educational information aimed at patients, caregivers, medical professionals and the public.
In 2018, AKF conducted two nationwide surveys of dialysis and kidney transplant patients and medical providers to learn more about their assumptions, understanding, and knowledge gaps related to the connection between anemia and kidney disease. The findings from the surveys will inform future enhancements to the ACT on Anemia campaign, and serve as an educational resource to further inform patients and medical providers about anemia and kidney disease.
The American Kidney Fund mailed surveys to dialysis and kidney transplant patients and digitally distributed surveys to renal health care providers across the country.
766 dialysis and kidney transplant patients and 337 renal health providers completed the surveys.
In fact, 16% percent of patients could not be sure that they knew the effect of anemia on their health and 19% did not feel sure they understood the relationship between anemia and kidney disease.
33% patients could not be sure they understood the risks of the medications or treatments they had received for anemia.
Nearly 1 in 3 patients (29%) either could not confirm or could not be sure a doctor or nurse had talked to them about anemia.
Of the dialysis and transplant patients who did talk with their doctor or nurse about anemia, only 37% of them said their provider consulted them about anemia treatments that would be best for them.
73% of dialysis and transplant patients who received consultation from their providers strongly agreed they felt informed of the reasons they were being treated for anemia compared to 42% who did not.
95% of dialysis and transplant patients who received consultation from their providers agreed or strongly agreed they felt informed of the associated risks of treatment for anemia compared to 44% who did not.
93% of patient respondents were on dialysis and 7% were living with a kidney transplant.
59% of women agreed or strongly agreed that they understood the risks of their anemia treatment, compared to 74% of men.
Specifically, 82% of women had been diagnosed with anemia compared to 72% of men.
Most of the renal providers we surveyed reported discussing anemia with all their dialysis patients.
Patients being overwhelmed or focused on other health factors (86%) and low health literacy among patients (78%) were identified by providers as the leading barriers to discussing anemia with dialysis patients. Other common barriers cited by providers were other health issues having greater priority (68%), not having enough time during an appointment (51%) and lack of educational resources (43%).
Although research shows collaboration between prescribers and pharmacists can improve kidney patient anemia care, less than 1 in 3 prescribers in our survey reported doing so.
61% of provider respondents were registered nurses and 32% were nephrologists.
The American Kidney Fund anemia surveys were supported by Akebia Therapeutics, Inc. and we are grateful for their support.
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