In January 1997, the American Association of Kidney Patients surveyed approximately 3,600 of its patient members in an effort to provide patient opinions on several of the NKF-DOQI recommended dialysis treatment guidelines. Over 2,000 patients responded with over 1,700 surveys containing valid responses.

The purpose of this survey was to understand the direct patient impact such recommendations as placement of vascular access in PD patients, intravenous administration of iron, increase of dialysis prescription and subcutaneous administration of Epotein had on patients’ willingness to participate in such procedures. AAKP felt the survey results would be very useful to the NKF-DOQI work groups, especially in the implementation process.

With that goal in mind, AAKP designed, pilot tested and fielded a self-administered survey of its membership regarding issues raised by selected draft DOQI guidelines. Covance Health Economics and Outcomes Services, Inc. provided survey assistance and performed all data analyses. The survey was funded by an educational grant from Amgen, Inc.

Hemodialysis Management 

Since 60.5 percent of the U.S. ESRD patients are currently receiving hemodialysis treatments, AAKP felt it was extremely important to understand how this large group of patients view their involvement in their hemodialysis treatment.

We found that there was substantial variation in the typical duration of dialysis prescribed for patients by their doctor. The average prescribed duration was three and a half hours, with 25 percent of the patients reporting an average prescribed duration less than three hours. Hemodialysis patients indicated a strong willingness to increase the duration of their hemodialysis sessions, by at least 15 minutes, if they knew that doing so would make them feel better or live longer.

Though the majority of patients stated they do not stop their treatment early, such factors as cramps, low blood pressure and other clinical occurrences are reasons they would stop early. One of the main ways to encourage patients to dialyze longer was identified as having the patient participate in the implementation planning. The survey results indicated patients want explanations of their treatment and want more involvement in the decision making process.

Peritoneal Dialysis Management

Unlike hemodialysis patients, peritoneal dialysis patients have the added responsibility of performing their own dialysis treatments every day. Nevertheless, 80 percent of these respondents said they always perform all of their prescribed exchanges, suggesting that the respondents were quite diligent with their care. For those who did not perform all of their exchanges, the reasons included being too busy or forgetting an exchange. Patients were asked to choose any of six options that would help them perform all of their prescribed exchanges.

Predominant answers included: making exchanges easier, explaining why it is important to do all exchanges, and having the patient be more involved in volume/exchange decisions.

AAKP was pleased to see that a substantial portion of PD patients, 67 percent, indicated a willingness to add an additional exchange per day or increase the volume of fluid they use during an exchange if they knew such a procedure could benefit their overall health. Such an indication reaffirms the concept that with the right education a patient is more apt to follow guidelines that assist in his care.

The survey also indicated that (continuous cycling peritoneal dialysis) patients, 53.4 percent, reported adding one manual exchange during the day. Contrarily, only a small percentage of patients on CAPD, 2.2 percent, reported a need for adding an exchange at night.

Vascular Access Management 

Hemodialysis requires an access to reach the blood which can be surgically placed in several different ways. A surgeon can connect an artery and vein together to create an arteriovenous (AV) fistula. When the artery and vein are connected with an artificial vein, it is called an arteriovenous graft. A catheter can also be inserted into a vein in the neck or chest to do hemodialysis temporarily. Of all the dialysis patients who had a functioning access for hemodialysis, 50 percent had an A-V fistula and 44 percent had a graft.

One of the NKF-DOQI guidelines refers to all pre-dialysis patients receiving an A-V fistula prior to beginning dialysis, whether the patient has chosen hemodialysis or peritoneal dialysis. AAKP felt it was very important to ask patients if they wanted to have a hemo access placed if they were choosing a different therapy. Current PD patients were divided on placement of such an access. Though 25 percent of current PD patients were "very" or "extremely" willing to have a hemo access placed if they knew that many PD patients have to change to hemo, 36 percent were not at all willing to have such an access placed. Interestingly, 60 percent of the patients who were previously on PD, but no longer on it, indicated they were willing to have had a hemo access placed prior to starting PD.

 Anemia Management

There are a few NKF-DOQI guidelines regarding anemia management that have a direct relationship to how patients receive their care. One such guideline suggests that patients receive their Epogen (EPO) subcutaneously (by injection under the skin) as opposed to intravenously. The reasoning for this, according to NKF, is that patients require less medication because subcutaneous EPO is absorbed into the system slower than IV, and thus more effective. Patients responded to the question concerning the factors they felt doctors should consider when deciding which route (subcutaneous or intravenous) to administer EPO. Ninety-three percent of the patients felt it was "very" or "extremely" important that the doctor make his decision based on "how EPO works best for me." While not the top concern, more than two-thirds of patients thought it was "very" or "extremely" important for doctors to consider the patient’s preference with regard to route of administration of EPO. 61 percent of the patients also thought it was of "little or no importance" how painful EPO was to receive, while 28 percent thought this to be an important concern. Interestingly, 98 percent of peritoneal dialysis patients were currently receiving their EPO via subcutaneous, while only eight percent of hemodialysis patients received subcutaneous injections. As with other responses to sections in the survey, the vast majority of patients wanted to be involved in the decision making process.

The NKF-DOQI guidelines highly recommend the use of intravenous (IV) iron as opposed to oral iron to be used in increasing a patient’s hematocrit. Patient concerns regarding whether iron should be repleated orally or intravenously centered around clinical considerations. (ie: comparative effectiveness and safety). These included concerns such as the safest type of iron, potential side effects and most effective type. It is noteworthy that 50 percent of the respondents considered cost to "Medicare/insurer/taxpayer" to be very or extremely important in the administration of iron.

Conclusion

Joseph D. White, president of AAKP stated, "AAKP believes the successful implementation of these guidelines will provide kidney patients with a higher quality of dialysis. We also believe that patients can contribute to the success of the implementation process. By understanding patient reactions to the procedures contained in the guidelines, the implementation team can tailor the procedures for optimum patient benefit and the patient education program can be focused for optimum patient participation. These are the reasons we undertook the survey."

One reaction that was apparent throughout the survey results was that patients feel strongly about their participation in healthcare decisions that directly affect them. To this end, in order for many of the new guidelines to be well received by patients, education will be needed at various levels. Printed educational brochures are available through AAKP on the adequacy of peritoneal dialysis, adequacy of hemodialysis, benefits and uses of iron and anemia. The brochures detail the importance of many of these guidelines.

"All of us in the renal community, from the patients to the nephrologists, have an opportunity to increase the level of care received in this country. With the renal community joining together to promote such education within both the professional and patient segments, the patients will certainly be the winner in this community project," said Kris Robinson, executive director of AAKP.

This article originally appeared in the summer 1997 issue of aakpRENALIFE.