By Keith Norris, MD

The American Association of Kidney Patients (AAKP) Patient Plan© represents the long overdue comprehensive patient-oriented educational material not only for patients with end-stage renal disease (ESRD), but also for the healthcare professionals who care for them. As a nephrologist, I see the Plan offering a consistent message to my patients. This is one of the most critical areas in the care of the ESRD patient. Many patients either are diagnosed late in their disease or are in various states of denial. In the process of preparing for renal replacement therapy, the patient and family members will come in contact with a variety of healthcare professionals such as dietitians, social workers or different nephrologists and often times other patients. Professionals have their own perspective on what information is important and relevant for the pre-ESRD or early ESRD patient. Thus, it is easy to see how a patient can become confused and frustrated when the messages and the information they receive from professionals is inconsistent.

Likewise each member of the healthcare team finds it difficult to gain the trust and confidence of the patient when the message and information the patient receives seems conflicting. This contributes to patient's cynicism of the entire process and may impact on their compliance/adherence to prescribed therapies, follow-up appointments and other critical aspects of their pre-ESRD and ESRD care. Patients will often focus on these conflicting messages in an attempt to support the denial they may have developed about their illness.

The Plan is not only an important educational tool for the patient but for the healthcare professional as well. Often times each member of the healthcare team selects the information they feel the pre-ESRD or early ESRD patient needs to understand. While a variety of healthcare materials exist for these patients, the Plan represents the first inclusive and organized educational piece that is patient friendly and addresses practical questions patients often have in addition to the information healthcare professionals want them to have. This is another critical point. If a patient feels educational material is directed toward their concerns, they are more likely to value and utilize it. At the same time, the Plan becomes a strong reminder for the renal healthcare professional that a comprehensive picture is being presented to the patient and that it is our responsibility as healthcare providers to start early in helping our patients and their families to understand the full spectrum of ESRD. By educating and engaging patients early on about the full spectrum of their ESRD care, we are most likely to empower them to be proactive in their care.

In our unit, the first step for introducing the Plan will be providing it to all members of our healthcare team and using it as the basis of our continuing education sessions. The Plan can be most effective for patients if our entire team can support its message and we have a clear understanding of its content. When the nephrologists introduce it in this manner, the renal care team will recognize the Plan as being important. Again, the patient will feel even more confident when they recognize the Plan is embraced, understood and supported by the renal care team. The timing of the Plan integrates perfectly with continuing implementation of the recent NKF-DOQI (dialysis outcomes quality initiative) and upcoming K-DOQI (kidney disease outcomes quality initiative), two quality care programs for the pre-ESRD and ESRD patient that are primarily directed toward the health professional. The Plan now adds the necessary comprehensive patient-directed component. It is imperative that the nephrologist, as the team leader, set the tone for the importance of the Plan as a critical piece in the puzzle of providing comprehensive renal healthcare. It will be our responsibility as renal healthcare professionals to ensure its success if we are to make improved patient outcomes a reality.

Keith Norris, MD, is Professor and Vice Chair, Department of Medicine and Director, Clinical Research Center at Charles R. Drew University in California. Dr. Norris is a member of the AAKP Board of Directors and the AAKP Medical Advisory Board.

This article originally appeared in aakpRENALIFE Special Edition 2000, Vol. 16, No. 2.

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