Survey Says: Dialysis Patients and Caregivers Seek More Time with Healthcare Providers

(NEW YORK, NY) — September 19, 2011 — Nearly 50% of dialysis patients and their caregivers surveyed last month by the National Kidney Foundation indicated that their healthcare providers have less time for them now than in the past. Both patients and caregivers would like to spend more time discussing their lab goals and progress with their health care team than they currently do, according to the survey of 450 dialysis patients and 75 caregivers.

"This survey provided an important insight into patients’ perception of their care and is especially important now, when we are undergoing changes in our medical payment system," said Dr. Lynda Szczech, MD, MSCE, Associate Professor of Medicine in the Division of Nephrology, Department of Medicine at Duke University Medical Center and President of the National Kidney Foundation. Half of the patients who surveyed were not aware of the new bundled payment system for dialysis treatment.

Dr. Szczech explained that, "Under the new system, reimbursements for dialysis session, lab tests and medications are lumped together in a global payment, instead of Medicare paying for each service individually. While there are advantages to the new payment system, including efficiency and reduction of costs, there is a potential risk that the very sick patients could be viewed as too expensive to treat and that some patients may receive less treatment, due to payment considerations."

"We recognize the reality of changes in patient care and coverage and see this as an opportunity to reach out to all of our constituents." Dr. Szczech continued, "By sharing the survey responses, NKF would like to encourage better communication between physicians and patients. The goal is for healthcare providers to explain medical issues in an easy-to-understand way, listen carefully, and spend enough time to make patients and their caregivers fully participants in the care process. We must ensure that patients are provided with the appropriate level of care at the right time."

The goal of the survey was to solicit input from patients and caregivers regarding quality of care, kidney disease knowledge, anemia and bone disease management. Additional findings from the Patient Engagement Survey with End Stage Renal Disease Patients and Caregivers included:

  • Almost 70 % of patients and 80% percent of caregivers are extremely interested in learning more about how kidney disease affects the patient’s daily activities.
  • Over 30% of patients and caregivers state that they don’t know the recommended hemoglobin (Hb) level for people on erythropoiesis-stimulating agents or ESA’s.
  • While only 10% of patients or their caregivers feel quality of care has declined recently, approximately half say the patients are more tired now compared to 6 months ago.
  • Approximately 25% of the total respondents said that the patient has recently had more trips to the hospital because of their kidney failure.
  • A majority of patients have received at least one blood transfusion. Over one-third of those patients reported that they received three or more transfusions

The National Kidney Foundation is dedicated to preventing and treating kidney and urinary tract diseases, improving the health and well being of individuals and families affected by these diseases, and increasing availability of all organs for transplantation. More than 26 million American adults have chronic kidney disease, 382,000 people in the United States and two million worldwide depend on dialysis to treat kidney failure.

To learn more about CKD risk factors, prevention and treatment, contact the National Kidney Foundation at or (800)622-9010.