New AAKP Head Calls on PCPs, Specialists, and Patients to Team Up

Kim Buettner, one-time communications director of the American Association of Kidney Patients (www.aakp.org), is the association’s new executive director. Renal & Urology News staff writer Delicia Honen Yard spoke with Buettner about trends in renal care and how this care can be improved.

RUN:  Have you noticed any new renal-care practices or policies that you consider especially beneficial to kidney disease patients?

KB: Changes in the health-care paradigm to make CKD education and awareness a vital part of therapy definitely represent movement in the right direction. Since the major costs related to end-stage renal disease (ESRD) center on the transition to dialysis and the viability of a vascular access, early education as well as early placement of an access should continue to be emphasized.

The AAKP believes in the importance of educating patients fully about treatment options and has noticed some increases in this trend, but improvements are still necessary. In September 2008, a patient attending our annual convention told us her physician never informed her of treatments other than in-center hemodialysis.

It wasn’t until she received AAKP’s educational materials that she learned of additional options, including transplantation. Even patients who are not candidates for a treatment should be given all the information and their ineligible status explained to them. A full-disclosure approach strengthens the relationship between patient and physician.

Community awareness programs, such as Fistula First (www.fistulafirst.org), have also helped to ensure that this type of information is widely available.

What gaps in the delivery of renal care, if any, should be closed immediately?

With the increased awareness of CKD, there is a gap in resources for primary-care physicians (PCPs). The question remains when and how a patient should be referred to a nephrologist. Physicians in many specialties may treat a kidney patient or someone who is at risk for developing reduced kidney function. We need to find an uncomplicated method to join resources and maintain a consistency with communication and education. 

Pharmaceutical companies are also noticing this gap and have begun education programs not affiliated with any of their product lines. Pharmaceutical representatives are visiting primary-care physicians and specialists who may treat kidney patients to provide information specifically about CKD and when to refer to a nephrologist.

We are also seeing a small trend in which local nephrologists are seeking to educate primary-care physicians about the tests that should be performed on high-risk patients.

What do patients want from their nephrologist?

In addition to having a physician who is knowledgeable and board-certified in nephrology, most patients want to connect with their physician on a personal level. I don’t mean that patients need to know intimate details of the physician’s personal life, but rather they want a physician who comes across as caring and is willing to take the time to explain their disease and treatment.

AAKP receives approximately 1,000 phone calls per month from patients. There is a difference in callers that is reflected in how they relate their experience with their physician. Patients who feel they are in alignment with their physician have a more comforted demeanor—they feel, and rightfully so, as if they are a member of the health-care team. Patients who feel disconnected from their physician come across more as frustrated and upset.

What do you think are the biggest challenges faced by the renal-care team in terms of managing patients?

Patients will not have the support to make the health changes that physicians and the health-care team prescribe as necessary. Medications can be expensive, as are the recommended diets. We have received phone calls from individuals who must decide if they will buy the family groceries or purchase their monthly medications. Helping patients face a significant hurdle such as this one is challenging for the treating physician.

Physicians and the health-care team can sometimes ask a lot of patients. Exercising, giving up cigarettes, and eating healthy take a great deal of effort. Abandoning old habits is not easy.

In addition, many health plans have restricted physician services. All too often patients cannot see the specialists their doctors recommend because the specialists do not participate in the patient’s plan.

How can AAKP work with nephrologists to enhance patient care?

The resources the organization creates are ideal education tools for physicians to provide to their patients. AAKP’s resources are available in print as brochures and magazines, on its Web site, over the telephone through a program called AAKP HealthLine, and in person through a nationwide education program called Kidney Beginnings: Live. The AAKP has a medical advisory board of physicians to ensure that the information the association provides is accurate and appropriate.

What does AAKP advise to ensure that patients get the most from nephrology services?

For 40 years, the AAKP has been urging patients to take an active role in their health care—to be leaders of their health-care team. AAKP was founded by six patients who were receiving hemodialysis at Kings County Hospital in Brooklyn, N.Y., during a time when patients dialyzed overnight in a hospital for 12-18 hours. Group members had an incredible drive to be involved in their own care.

The group started by producing a newsletter, which eventually grew into a magazine. Today, the AAKP produces several magazines and brochures, holds telephone and other conferences that are attended nationwide, and maintains a Web site to help patients understand their disease and become active in their care.

With the continued growth of the Web, AAKP has created a free personal health record for CKD and ESRD patients. This tool, which can be accessed at www.aakp.org/my-health, allows patients to store their laboratory results, medication lists, contact lists, and notes from recent doctor appointments.

All information is printable, which allows the patient to take the information along to doctor visits. This helps the patient facilitate discussions with the physician and keeps the physician up to date regarding the health and lifestyle decisions of the patient.