- Email: [email protected]
The Role of Patients in the Implementation of the National Kidney Foundation-Dialysis Outcomes Quality Initiative
The Role of Patients in the Implementation of the National Kidney Foundation-Dialysis Outcomes Quality Initiative Marilyn D. Swartz, Kris Robinson, Taylor Davy, and Gigi Polito ski Patients have a fundamental right to be involved in making decisions that affect their health care treatment and outcomes. Patients need to be knowledgeable about disease process and treatment options to exercise this right. The National Kidney Foundation-Dialysis Outcomes Quality Initiative (NKF·DOQI) Clinical Practice Guidelines on Hemodialysis Adequacy, Peritoneal Dialysis Adequacy, Treatment of Anemia of Chronic Renal Failure, and Vascular Access, introduced in 1997, include new clinical recommendations that may impact patient treatment choices. Access to these guidelines presents a unique professional opportunity to empower patients through education related to NKF-DOQI. This article highlights the role of patients in implementing NKF-DOQI in light of studies conducted by two renal patient organizations, the National Kidney Foundation (NKF) and the American Association of Kidney Patients (AAKP) . Results from the AAKP survey indicate that end-stage renal disease patients are willing to change behavior to feel better and live longer. Results from the NKF focus study show that dialysis patients need to receive information about NKF-DOQI and understand its direct impact on patient outcomes. In addition, results from both studies reveal that patients feel strongly about participating in health care decisions that impact on their treatment and outcomes. © 1999 by the National Kidney Foundation, Inc. Index Words: National Kidney Foundation-Dialysis Outcomes Quality Initiative (NKF-DOO/); patient education; NKF-DOOI implementation programs; end-stage renal disease; improved outcomes.
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atients have a right to be involved in making decisions that affect their health care treatment and outcomes. However, many patients may have been conditioned to accept medical and other services with minimal or no questioning. In addition, many patients with end-stage renal disease (ESRD), because of fatigue, under-nutrition, and the chronic demands of dialysis, may have difficulty sustaining interest and enthusiasm for active participation in their care. They may not know enough about the importance of adhering to their treatment prescription. According to Shapiro et aI, 1 80% or more of ESRD patients show some type of noncompliance with regard to treatment regime involving diet, fluid, and medication. Renal patients may not be aware that in 1997 specific clinical practices were recommended by the National Kidney Foundation-Dialysis Outcomes Quality Initiative (NKF-DOQI) Clinical Practice Guidelines on
From the National Kidnetj Foundation, New York, NY; and the A merican Association of Kidney Patients, Tampa, FL. A ddress correspondence to M arily n D. Swartz, MS, RN, Na tiol1al Kidl1ey Foul1datiol1, 30 East 33rd St, New York, NY 10016; e-mail: [email protected]. © 1999 by the N ational KidneIj Fou ndation, Inc. 1073-4449/99/0601 -0009$3.00/0
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Hemodialysis Adequacy, Peritoneal Dialysis Adequacy, Treatment of Anemia of Chronic Renal Failure, and Vascular Access. They may not realize that much of the content of these Guidelines is pertinent to their making treatment choices that will potentially improve their outcomes. In addition, because ESRD requires on-going treatment, education, and rehabilitation, Medicare-approved dialysis facilities are required to inform patients of all available treatment options for end-stage renal failure and to review treatment modalities on an annual basis. 2 In light of these concerns, patient education is an essential element of quality health care for the renal patient and his or her family. Being knowledgeable about disease process and treatment options will enable patients and families to exercise their fundamental right to make vital decisions about their treatment. Adequate patient education can effect positive outcomes. In an unpublished study to evaluate outcomes following patient/ family participation in the National Kidney Foundation's People Like Us, Live! program, findings show that patients (n = 78) had more positive mental attitudes, fewer reported symptoms of depression and anxiety, and less distress from their health conditions following participation
Advances in Renal Replacement Therapy, Vol 6, No 1 (January), 1999: pp 52-58
Patient Role in Implementation of NKF-DOQI
in the educational process. Renal patients who are well-educated about all aspects of their disease feel empowered to take control of their lives and are able to work cooperatively with their dialysis care team. 3 Compliance is enhanced when patients believe their treatment is correct and when they are satisfied with their treatment regime. 4,5 The 1997 introduction and extensive distribution of the NKF-DOQI Clinical Practice Guidelines presents a unique opportunity for professionals to educate patients so that they can make informed choices to potentially improve outcomes. Not only do patients and families need to be informed about the existence of the NKF-DOQI Clinical Practice Guidelines and how these recommendations will impact on their life-styles, but they also need appropriate support to "buy-in" to the potential benefit of complying with the Guidelines to make the necessary life-style adjustments that must subsequently ensue to improve outcomes. To achieve this, health care providers must implement a comprehensive educational effort within their respective treatment facilities that focuses on the core messages of these Guidelines.
National Kidney Foundation (NKF) and American Association of Kidney Patients (AAKP) Activities The NKF-DOQI recognizes the need for patient participation in implementing the NKFDOQI Clinical Practice Guidelines. Valuable patient input that was collected by the NKF and the AAKP has been particularly useful in NKF-DOQI implementation. Both organizations sought input from their patient constituents. The NKF has over 8,100 active members comprising its Patient and Family Council. The AAKP has an active membership of just under 8,000. From January 1998 to April 1998, the NKF collected data about the educational needs of patients in relation to NKF-DOQI and explored the perceived patient role in NKFDOQI implementation. During this time, the NKF also involved patients in testing printed educational material to determine the effectiveness of this material in imparting necessary information. The purpose of the AAKP survey was to ascertain the direct, patient-perceived
53
impact of specific NKF-DOQI Guidelines on patients' willingness to participate in procedures related to particular Guideline recommendations.
AAKP Survey Results The AAKP surveyed 3,600 ESRD patients. Of the total number of respondents (n = 2,157), 48% (n = 1,684) were receiving hemodialysis (HD) therapy, 11% (n = 1,684) were receiving peritoneal dialysis (PD) therapy, and 41% (n = 1,684) were transplanted. Many of the respondents had spent time undergoing treatment in more than one modality. Data was collected through use of an instrument comprised of 27 multiple choice questions, along with a section for specific comments. Results of the AAKP survey indicate that dialysis patients would be willing to make changes to feel better and live longer. Those patients already on HD indicated a strong willingness to increase the duration of their treatment sessions. Of those "very" or "extremely" willing to increase their session (1) 75% (n = 761) would do so by 15 minutes; (2) 67% (n = 761) would do so by 30 minutes; (3) 43% (n = 761) would increase their session by 45 minutes, and (4) 40% (n = 761) would increase the treatment session by 60 minutes. Sixty-seven percent of patients on PO indicate a strong willingness to add an additional exchange per day or increase the volume of fluid used in an exchange if they knew such procedure could benefit their overall health. Data also show that 53.4% (n = 171) of patients being treated with continuous cycling peritoneal dialysis (CCPD) are willing to add a manual exchange during the day. Patients included important remarks such as, "A patient might change habits if they became more dialysis educated; improving dialysis outcomes depends on more than just medical intervention," " Anything over 30 minutes more (treatment time) would be difficult, but if it is necessary 1 would do it," and "I cannot make a decision until the nephrologist explains the reason." These data reinforce some patients' willingness to alter behavior as needed to improve outcomes. Regarding compliance, one half of the respondents on HD said they never stop a
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dialysis treatment early. However, for those who have had to stop their treatment early, the main reasons cited were "cramps," "drop in blood pressure," and" other clinical reasons." Thus, from the patient perspective, it appears that the main reason for early termination of an HD session is clinical management, as opposed to patient noncompliance, which is often cited. The AAKP survey results indicate that patient noncompliance actually constitutes less than 10% of the reasons for terminating treatment sessions early. With regard to patients being treated with PD, data show that 80% of respondents always perform all of their prescribed exchanges. These findings reaffirm the concept that with adequate education, a patient is more apt to comply with Guidelines that optimize his or her care. In addressing patient perception regarding the NKF-DOQI Guideline related to placement of arterio-venous (AV) fistula, AAKP felt it important to ascertain if patients would want a hemodialysis access placed if they were choosing a treatment modality other than hemodialysis. Findings show that patients currently on PD were divided in their responses to this question. Though 25% of patients currently on PD were "very" or "extremely" willing to have a hemodialysis access placed if they were told that "many times patients on PD have to change their treatment modality," 36% were not willing to have such an access placed. Interestingly, 60% of patients who were previously on PD (but no longer) indicated they were willing to have had a hemodialysis access placed before initiating PD. Data concerning patient perception related to Guidelines on anemia management reveal that 93% of patients feel it is "very" or "extremely" important that physicians base their decision for choosing the route of Epoetin (EPO) on "how EPO works best for me." Concerning the use of iron to achieve the target hematocrit, patients were most interested in clinical considerations such as "efficacy" and "safety" rather than "intravenous route" versus" oral route." Interestingly, 50% (n = 965) of the respondents considered cost to "Medicare / insurer / taxpayer" to be "very" or "extremely" important in administering iron. In addition to determining valuable patient
perceptual data, survey results also indicate that renal patients need education at various levels regarding the importance of the NKFDOQI Guidelines.
NKF Survey Results In a recent focus study, the NKF polled a random sample of 55 ESRD dialysis patients, chosen from the over 7,000 member pool of the organization's Patient and Family Council. Of a variety of possible data collection methods, a "focus study," which involves collecting data from a small sample of participants selected from a large population for the purpose of asking questions and gaining information, seemed the most potentially effective and manageable of procedures. The study targeted dialysis patients in an effort to obtain feedback regarding the need for patient education in relation to NKF-DOQI and to determine patient opinion related to the patient's role in implementation. A prestudy questionnaire, sent to selected participants to assess participation interest and patient-need-to-know, indicated that 77% of participants (n = 55) considered themselves to be "somewhat informed about NKF-DOQI," or "not informed" at all. Other participant responses in this same questionnaire affirmed patients' willingness to learn in addition to suggesting high patient preference for information dissemination in printed format. Considering this feedback, printed NKF-DOQI educational material was, therefore, a justifiably appropriate, initial vehicle by which to communicate patient information and achieve focus study objectives. All 55 dialysis patients in this focus study took part in a preassessment survey. The survey, consisting of a 20-minute, 18 question telephone interview, was developed to ascertain participants' current treatment-related feelings, behaviors, and knowledge. Some items in this survey were also constructed in such a manner as to afford participants the opportunity of self-report regarding their personal treatment attitudes, needs, and suggestions. Critical review of the pre assessment survey was performed using a "data collection of a noninstructed group" approach. Participant responses to both subjective and objective
Patient Role in Implementation of NKF-DOQI
multiple choice items, reflective of treatmentrelated past learning experiences, revealed varying levels of affect, behavior, and cognition. For instance, more than one half of respondents said they were "not sure" what Kt/V or URR referred to, or what the target value parameters should be. Yet, 51 % of these patients (n = 55) "always" keep a record of their values, and 67% of respondents knew that Kt/V or URR is measured by monthly blood tests. Similarly, while 82% of participants (n = 55) knew that their iron levels are monitored by blood tests called "TSAT" and "ferritin/' and 70% knew that anemia in kidney patients is treated with iron supplements and a hormone called EPO, 71 % of respondents (n = 55) indicated that they could not identify the benefits of correcting anemia. Nearly 60% of participants " always" keep a record of hematocrit values, but, in answering another item, 61% were unable to identify the effective hematocrit target range. In examining response inconsistencies such as these, analysis of pre assessment data (including objective and subjective items, selfreport items, and patient comments) begins to show patient educational needs by illustrating where patients stand in relation to the taxonomy of thinking (memory, comprehension, application, analysis, synthesis, evaluation). Patient statements such as, HI just go and get my treatments; I don' t know anything/' or HI remember things, but I don't understand them/' are straightforward in their exposition of problem and need. Despite forced choice item responses representative of affective satisfaction and behavioral effectiveness, many participants admit, by self-report, that they " feel helpless/' have little or no meaningful interaction with the dialysis team, and need more in-depth information regarding their condition and treatment. Additionally, many patients go on to report that they learn about their disease and their treatments through other patients, personal reading, and the internet. Overall, responses show acquisition of information (memory), but without evidencing the comprehension necessary for effective application of learning and further progression of cognition. The health care team, in extending patient education to include information such as the explanation and benefits of
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target hematocrit values, can aid in facilitating progression through this process. Between the pre assessment and postassessment surveys, 12 patients dropped out of the focus study for a variety of reasons, including "loss of interest" and "lack of time." This focus study analysis includes questionnaire and preassessment data reported by these patients, because participant drop-oft in this case, reinforces an important learning hypothesis: that exposure to educational material alone cannot assume that effective learning will or will not take place. Of the participants who reported that they had received and read the NKF-DOQI information sent to them by the NKF, 43 completed a postassessment survey, which followed the same format as the preassessment survey. Responses to a significant number of items show increased acquisition of NKF-DOQIrelated information. For instance, 52% of respondents (n = 43) in the postassessment survey were able to identify Hfistula" as the best recommended access, compared with 43% (n = 55) in the preassessment survey. Fiftyseven percent of patients (n = 43) in the postassessment survey knew that Kt / V and URR measure how much dialysis is received, compared with 34% (n = 55) who could answer that item correctly before receiving the educational material from the NKF. Interestingly, and in support of the interim hypothesis discussed between pre assessment and postassessment analyses, another observation was made. Although correct responses to some items in the pre survey increased in the postsurvey, responses to related items having to do with comprehension remained low. Referring again to the example about anemia in kidney patients, in the presurvey, 70% of participants (n = 55) identified the correct treatment for anemia, yet 71% (n = 55) were unsure of the benefits of treatment. In the postsurvey, 89% (n = 43) knew the appropriate treatment, but indications of less than adequate comprehension and synthesis of learning were evidenced in that 82% of respondents (n = 43) were unable to recognize the benefits of correcting anemia. As with the preassessment, further data in congruencies were noted throughout the postsurvey, as shown through the juxtaposi-
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tion of multiple choice responses and selfreport items/ comments. Multiple choice responses indicated that more than 50% of participants (n = 43) interact with the dialysis care team regarding treatment-related problems and questions. They indicated that they feel in control and are satisfied with their care. However, self-report items and comments reveal that, to a large degree, these same patients receive most of their treatment information via books, television, and the internet. Participant comments indicating that patients "need real education," and "don't know what to do to help themselves" reinforce data collected in the pre survey. At the end of the postsurvey, 90% of respondents (n = 43) agreed that patients should be involved in implementing the NKF-DOQI Guidelines. Their most frequent suggestions for doing this include: (1) form educational support groups; (2) learn treatment terminology to better understand the guidelines; (3) educate some patients who can then go out and teach other patients; (4) introduce frequent professional/patient face-to-face discussions; and (5) schedule seminars and use audio / visual aids. These and other comments and suggestions articulate ESRD patients' desire and need to learn about their disease and treatment in a way that is clear and meaningful enough to support, rechannel, and guide treatment-related involvement and commitment that, in turn, may lead to improved outcomes and quality of life. Regarding such new patient educational materials as these proposed by NKF-DOQI, their ultimate value and effectiveness will depend on how the materials are implemented and on how well the health care team individualizes assessment of patient need and learning style. The success of these programs will likely differ from site to site. Overall, the results of the AAKP and the NKF studies reflect that patients need education regarding NKF-DOQI and that they feel strongly about participating in health care decisions that directly affect them. In particular, results of the NKF focus study show the need of dialysis patients for disease / treatment related education in the form of information dissemination that extends basic knowledge
into the comprehension necessary for patient application and synthesis of learning.
NKF-DOQI Implementation: The Patient Education Initiative NKF-DOQI has developed a comprehensive implementation plan that includes a patient education initiative as well as professional education and evaluation initiatives. The patient education initiative involves a coordinated effort aimed at increasing patient knowledge and skill and offering support of newly acquired knowledge. Objectives of NKFDOQI patient education activities include developing programs that focus on key messages of the four topics of the NKF-DOQI Clinical Practice Guidelines: Hemodialysis Adequacy, Peritoneal Dialysis Adequacy, Treatment of Anemia of Chronic Renal Failure, and Vascular Access. Patient education programs are designed at various educational levels to provide information, motivation, and education and to offer support. Informational programs include basic elements and core messages extracted from the content of the Guidelines. Motivational programs are designed to be interest-generating in an attempt to gain the attention of patients and family members, whereas educational programs include focused messages to help patients learn what to expect from the Guidelines. Supportive programs are designed to reinforce learning over time, which is essential in the learning process. Programming in all categories is directed toward patients and families and focuses on increasing knowledge and improving patient compliance, patient's rights and responsibilities, and helping patients become advocates of high-quality care. Both the NKF and the AAKP share the philosophy that patients have the right to be informed about their disease and treatment options so that they are able to make treatment decisions that impact on their quality of life; therefore, both organizations are committed to addressing patients' educational needs by engaging in NKF-DOQI implementation activities. Patient programs currently available from the NKF include: a Getting the Most From Your
Patient Role in Implementation ofNKF-DOQI
Treatment: What You Need To Know brochure series, a special NKF-DOQI edition of Family Focus, the renal community's newspaper published by NKF, wall charts, and a "Dialysis Report Card." The What You Need To Know brochure series includes five patient education pamphlets addressing core messages from hemodialysis adequacy, peritoneal dialysis adequacy, vascular access, treatment of anemia of chronic renal failure, and elements of all four topics that relate to pre-ESRD. These brochures will be available in English and Spanish. The special issue of Family Focus, which was published in August 1998, is dedicated exclusively to NKF-DOQI. Featured articles include the history and evolution of NKF-DOQI and its significance to patients, core messages of all four guideline topics, answers to dialysis questions frequently asked by patients and families, and tips on how to read and interpret laboratory values for patients. Four wall charts/posters, one for each NKF-DOQI topic, contain key elements of the Guideline in that particular topic and will be available in Spanish as well as English. These posters highlight concise, abbreviated, bulletpoint messages, using appropriate illustrations to help convey the printed information. These resources serve as visual learning aids to patients and families once they are displayed. The "Dialysis Report Card" is a support tool to help patients and family members become more active in their care. Use of this report card helps patients track important laboratory data and visualize where they stand in relation to established goals. A fully completed sample of this tool can be found in the Getting The Most From Your Treatment: What You Need To Know About Hemodialysis Adequacy brochure, along with instructions for use. Multiple blank tools, each of which includes space for individualized recording of laboratory data for 1 year, are available to patients and dialysis staff. Use of this tool not only allows patients and staff to monitor adequacy of treatment, it also facilitates ongoing teaching and learning discussions. In addition, educational sessions addressing NKF-DOQI were included in the Patient Program Track of the 1998 NKF Annual Meeting in Philadelphia, PA. Topics of these sessions address core messages and ap-
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plicability of the Guidelines to patient decisionmaking, dialysis adequacy, patient empowerment, and coping. AAKP has also initiated projects to help patients understand the importance of the NKF-DOQI Clinical Practice Guidelines. Printed patient education brochures that explain adequacy of hemodialysis, adequacy of peritoneal dialysis, and the use of intravenous iron are currently available to patients. The Summer 1998 edition of aakpRENALIFE, the magazine of AAKp, is devoted to the four topics of the NKF-DOQI Guidelines. AAKP also maintains a section of its monthly internet newsletter, aakpRenalFlash, to discuss the NKFDOQI Guidelines. Presentations addressing the Guidelines and the patient's role in implementation are being given by physicians and social workers to help patients learn how to partner with their health care professionals in an effort to support implementation of NKFDOQI to improve outcomes. In addition, patients were offered the opportunity to learn about the Guidelines by attending the 1998 AAKP Annual Patient Convention in Fort Lauderdale, FL. Topics addressed various medical issues surrounding patient care, including new advances in medicine, legislative issues, and family support issues.
NKF-DOQI Implementation: The Role of the Patient Whether or not the patient groups targeted by the AAKP and the NKF studies are representative of all patients, renal professionals, nevertheless, have a unique opportunity to empower their patients to improve their outcomes. Successful NKF-DOQI implementation, which ultimately will be measured in improved patient outcomes, is a shared responsibility. The entire renal community needs to be involved. Renal professionals need to be knowledgeable about NKF-DOQI to provide the necessary education that will empower their patients. Just as each patient is provided with an individualized dialysis prescription, so too must each patient be given an "individualized education prescription." Health care providers need to ask, "How much do my patients know about their treatment options and treat-
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ment plan," "At what level of learning is this particular patient," and "How can I help my patients advance their knowledge?" Only when these questions are addressed will patients get the education they need to exercise their right to make informed choices, thereby assuming some measure of control and responsibility for their health care. With understanding, patients will be able to improve their outcomes and quality of life. If you would like additional information on NKF-DOQI implementation or related programs, please contact the National Kidney Foundation at 800-622-9010, or the American Association of Kidney Patients at 800-749AAKP.
Acknowledgment The authors thank Cornelia Cavanagh, Donna Fingerhut, Patricia O'Connor, Kester Williams, and others for their contribution to this article.
References 1. Shapiro RS, Deshetler RN, Stockard HE: Fluid overload
2. 3.
4.
5.
again! A technique to enhance fluid compliance. Dial Transplant 23:303-305,1994 Pub L. No. 92-603. Social Security Amendments, 1972 King K: People like us, live: An interactive patient education program. Eur Dial Transplant Nurses Associ Eur Ren Care Assoc 23:34-35, 50,1997 Anderson RJ, Kirk LM: Methods of improving patient compliance in chronic disease states. Arch Intern Med 142:1673-1675,1982 King K: Noncompliance in the chronic dialysis population. Dial Transplant 20:67-68,1991
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atients have a right to be involved in making decisions that affect their health care treatment and outcomes. However, many patients may have been conditioned to accept medical and other services with minimal or no questioning. In addition, many patients with end-stage renal disease (ESRD), because of fatigue, under-nutrition, and the chronic demands of dialysis, may have difficulty sustaining interest and enthusiasm for active participation in their care. They may not know enough about the importance of adhering to their treatment prescription. According to Shapiro et aI, 1 80% or more of ESRD patients show some type of noncompliance with regard to treatment regime involving diet, fluid, and medication. Renal patients may not be aware that in 1997 specific clinical practices were recommended by the National Kidney Foundation-Dialysis Outcomes Quality Initiative (NKF-DOQI) Clinical Practice Guidelines on
From the National Kidnetj Foundation, New York, NY; and the A merican Association of Kidney Patients, Tampa, FL. A ddress correspondence to M arily n D. Swartz, MS, RN, Na tiol1al Kidl1ey Foul1datiol1, 30 East 33rd St, New York, NY 10016; e-mail: [email protected]. © 1999 by the N ational KidneIj Fou ndation, Inc. 1073-4449/99/0601 -0009$3.00/0
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Hemodialysis Adequacy, Peritoneal Dialysis Adequacy, Treatment of Anemia of Chronic Renal Failure, and Vascular Access. They may not realize that much of the content of these Guidelines is pertinent to their making treatment choices that will potentially improve their outcomes. In addition, because ESRD requires on-going treatment, education, and rehabilitation, Medicare-approved dialysis facilities are required to inform patients of all available treatment options for end-stage renal failure and to review treatment modalities on an annual basis. 2 In light of these concerns, patient education is an essential element of quality health care for the renal patient and his or her family. Being knowledgeable about disease process and treatment options will enable patients and families to exercise their fundamental right to make vital decisions about their treatment. Adequate patient education can effect positive outcomes. In an unpublished study to evaluate outcomes following patient/ family participation in the National Kidney Foundation's People Like Us, Live! program, findings show that patients (n = 78) had more positive mental attitudes, fewer reported symptoms of depression and anxiety, and less distress from their health conditions following participation
Advances in Renal Replacement Therapy, Vol 6, No 1 (January), 1999: pp 52-58
Patient Role in Implementation of NKF-DOQI
in the educational process. Renal patients who are well-educated about all aspects of their disease feel empowered to take control of their lives and are able to work cooperatively with their dialysis care team. 3 Compliance is enhanced when patients believe their treatment is correct and when they are satisfied with their treatment regime. 4,5 The 1997 introduction and extensive distribution of the NKF-DOQI Clinical Practice Guidelines presents a unique opportunity for professionals to educate patients so that they can make informed choices to potentially improve outcomes. Not only do patients and families need to be informed about the existence of the NKF-DOQI Clinical Practice Guidelines and how these recommendations will impact on their life-styles, but they also need appropriate support to "buy-in" to the potential benefit of complying with the Guidelines to make the necessary life-style adjustments that must subsequently ensue to improve outcomes. To achieve this, health care providers must implement a comprehensive educational effort within their respective treatment facilities that focuses on the core messages of these Guidelines.
National Kidney Foundation (NKF) and American Association of Kidney Patients (AAKP) Activities The NKF-DOQI recognizes the need for patient participation in implementing the NKFDOQI Clinical Practice Guidelines. Valuable patient input that was collected by the NKF and the AAKP has been particularly useful in NKF-DOQI implementation. Both organizations sought input from their patient constituents. The NKF has over 8,100 active members comprising its Patient and Family Council. The AAKP has an active membership of just under 8,000. From January 1998 to April 1998, the NKF collected data about the educational needs of patients in relation to NKF-DOQI and explored the perceived patient role in NKFDOQI implementation. During this time, the NKF also involved patients in testing printed educational material to determine the effectiveness of this material in imparting necessary information. The purpose of the AAKP survey was to ascertain the direct, patient-perceived
53
impact of specific NKF-DOQI Guidelines on patients' willingness to participate in procedures related to particular Guideline recommendations.
AAKP Survey Results The AAKP surveyed 3,600 ESRD patients. Of the total number of respondents (n = 2,157), 48% (n = 1,684) were receiving hemodialysis (HD) therapy, 11% (n = 1,684) were receiving peritoneal dialysis (PD) therapy, and 41% (n = 1,684) were transplanted. Many of the respondents had spent time undergoing treatment in more than one modality. Data was collected through use of an instrument comprised of 27 multiple choice questions, along with a section for specific comments. Results of the AAKP survey indicate that dialysis patients would be willing to make changes to feel better and live longer. Those patients already on HD indicated a strong willingness to increase the duration of their treatment sessions. Of those "very" or "extremely" willing to increase their session (1) 75% (n = 761) would do so by 15 minutes; (2) 67% (n = 761) would do so by 30 minutes; (3) 43% (n = 761) would increase their session by 45 minutes, and (4) 40% (n = 761) would increase the treatment session by 60 minutes. Sixty-seven percent of patients on PO indicate a strong willingness to add an additional exchange per day or increase the volume of fluid used in an exchange if they knew such procedure could benefit their overall health. Data also show that 53.4% (n = 171) of patients being treated with continuous cycling peritoneal dialysis (CCPD) are willing to add a manual exchange during the day. Patients included important remarks such as, "A patient might change habits if they became more dialysis educated; improving dialysis outcomes depends on more than just medical intervention," " Anything over 30 minutes more (treatment time) would be difficult, but if it is necessary 1 would do it," and "I cannot make a decision until the nephrologist explains the reason." These data reinforce some patients' willingness to alter behavior as needed to improve outcomes. Regarding compliance, one half of the respondents on HD said they never stop a
54
Swartz et al
dialysis treatment early. However, for those who have had to stop their treatment early, the main reasons cited were "cramps," "drop in blood pressure," and" other clinical reasons." Thus, from the patient perspective, it appears that the main reason for early termination of an HD session is clinical management, as opposed to patient noncompliance, which is often cited. The AAKP survey results indicate that patient noncompliance actually constitutes less than 10% of the reasons for terminating treatment sessions early. With regard to patients being treated with PD, data show that 80% of respondents always perform all of their prescribed exchanges. These findings reaffirm the concept that with adequate education, a patient is more apt to comply with Guidelines that optimize his or her care. In addressing patient perception regarding the NKF-DOQI Guideline related to placement of arterio-venous (AV) fistula, AAKP felt it important to ascertain if patients would want a hemodialysis access placed if they were choosing a treatment modality other than hemodialysis. Findings show that patients currently on PD were divided in their responses to this question. Though 25% of patients currently on PD were "very" or "extremely" willing to have a hemodialysis access placed if they were told that "many times patients on PD have to change their treatment modality," 36% were not willing to have such an access placed. Interestingly, 60% of patients who were previously on PD (but no longer) indicated they were willing to have had a hemodialysis access placed before initiating PD. Data concerning patient perception related to Guidelines on anemia management reveal that 93% of patients feel it is "very" or "extremely" important that physicians base their decision for choosing the route of Epoetin (EPO) on "how EPO works best for me." Concerning the use of iron to achieve the target hematocrit, patients were most interested in clinical considerations such as "efficacy" and "safety" rather than "intravenous route" versus" oral route." Interestingly, 50% (n = 965) of the respondents considered cost to "Medicare / insurer / taxpayer" to be "very" or "extremely" important in administering iron. In addition to determining valuable patient
perceptual data, survey results also indicate that renal patients need education at various levels regarding the importance of the NKFDOQI Guidelines.
NKF Survey Results In a recent focus study, the NKF polled a random sample of 55 ESRD dialysis patients, chosen from the over 7,000 member pool of the organization's Patient and Family Council. Of a variety of possible data collection methods, a "focus study," which involves collecting data from a small sample of participants selected from a large population for the purpose of asking questions and gaining information, seemed the most potentially effective and manageable of procedures. The study targeted dialysis patients in an effort to obtain feedback regarding the need for patient education in relation to NKF-DOQI and to determine patient opinion related to the patient's role in implementation. A prestudy questionnaire, sent to selected participants to assess participation interest and patient-need-to-know, indicated that 77% of participants (n = 55) considered themselves to be "somewhat informed about NKF-DOQI," or "not informed" at all. Other participant responses in this same questionnaire affirmed patients' willingness to learn in addition to suggesting high patient preference for information dissemination in printed format. Considering this feedback, printed NKF-DOQI educational material was, therefore, a justifiably appropriate, initial vehicle by which to communicate patient information and achieve focus study objectives. All 55 dialysis patients in this focus study took part in a preassessment survey. The survey, consisting of a 20-minute, 18 question telephone interview, was developed to ascertain participants' current treatment-related feelings, behaviors, and knowledge. Some items in this survey were also constructed in such a manner as to afford participants the opportunity of self-report regarding their personal treatment attitudes, needs, and suggestions. Critical review of the pre assessment survey was performed using a "data collection of a noninstructed group" approach. Participant responses to both subjective and objective
Patient Role in Implementation of NKF-DOQI
multiple choice items, reflective of treatmentrelated past learning experiences, revealed varying levels of affect, behavior, and cognition. For instance, more than one half of respondents said they were "not sure" what Kt/V or URR referred to, or what the target value parameters should be. Yet, 51 % of these patients (n = 55) "always" keep a record of their values, and 67% of respondents knew that Kt/V or URR is measured by monthly blood tests. Similarly, while 82% of participants (n = 55) knew that their iron levels are monitored by blood tests called "TSAT" and "ferritin/' and 70% knew that anemia in kidney patients is treated with iron supplements and a hormone called EPO, 71 % of respondents (n = 55) indicated that they could not identify the benefits of correcting anemia. Nearly 60% of participants " always" keep a record of hematocrit values, but, in answering another item, 61% were unable to identify the effective hematocrit target range. In examining response inconsistencies such as these, analysis of pre assessment data (including objective and subjective items, selfreport items, and patient comments) begins to show patient educational needs by illustrating where patients stand in relation to the taxonomy of thinking (memory, comprehension, application, analysis, synthesis, evaluation). Patient statements such as, HI just go and get my treatments; I don' t know anything/' or HI remember things, but I don't understand them/' are straightforward in their exposition of problem and need. Despite forced choice item responses representative of affective satisfaction and behavioral effectiveness, many participants admit, by self-report, that they " feel helpless/' have little or no meaningful interaction with the dialysis team, and need more in-depth information regarding their condition and treatment. Additionally, many patients go on to report that they learn about their disease and their treatments through other patients, personal reading, and the internet. Overall, responses show acquisition of information (memory), but without evidencing the comprehension necessary for effective application of learning and further progression of cognition. The health care team, in extending patient education to include information such as the explanation and benefits of
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target hematocrit values, can aid in facilitating progression through this process. Between the pre assessment and postassessment surveys, 12 patients dropped out of the focus study for a variety of reasons, including "loss of interest" and "lack of time." This focus study analysis includes questionnaire and preassessment data reported by these patients, because participant drop-oft in this case, reinforces an important learning hypothesis: that exposure to educational material alone cannot assume that effective learning will or will not take place. Of the participants who reported that they had received and read the NKF-DOQI information sent to them by the NKF, 43 completed a postassessment survey, which followed the same format as the preassessment survey. Responses to a significant number of items show increased acquisition of NKF-DOQIrelated information. For instance, 52% of respondents (n = 43) in the postassessment survey were able to identify Hfistula" as the best recommended access, compared with 43% (n = 55) in the preassessment survey. Fiftyseven percent of patients (n = 43) in the postassessment survey knew that Kt / V and URR measure how much dialysis is received, compared with 34% (n = 55) who could answer that item correctly before receiving the educational material from the NKF. Interestingly, and in support of the interim hypothesis discussed between pre assessment and postassessment analyses, another observation was made. Although correct responses to some items in the pre survey increased in the postsurvey, responses to related items having to do with comprehension remained low. Referring again to the example about anemia in kidney patients, in the presurvey, 70% of participants (n = 55) identified the correct treatment for anemia, yet 71% (n = 55) were unsure of the benefits of treatment. In the postsurvey, 89% (n = 43) knew the appropriate treatment, but indications of less than adequate comprehension and synthesis of learning were evidenced in that 82% of respondents (n = 43) were unable to recognize the benefits of correcting anemia. As with the preassessment, further data in congruencies were noted throughout the postsurvey, as shown through the juxtaposi-
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tion of multiple choice responses and selfreport items/ comments. Multiple choice responses indicated that more than 50% of participants (n = 43) interact with the dialysis care team regarding treatment-related problems and questions. They indicated that they feel in control and are satisfied with their care. However, self-report items and comments reveal that, to a large degree, these same patients receive most of their treatment information via books, television, and the internet. Participant comments indicating that patients "need real education," and "don't know what to do to help themselves" reinforce data collected in the pre survey. At the end of the postsurvey, 90% of respondents (n = 43) agreed that patients should be involved in implementing the NKF-DOQI Guidelines. Their most frequent suggestions for doing this include: (1) form educational support groups; (2) learn treatment terminology to better understand the guidelines; (3) educate some patients who can then go out and teach other patients; (4) introduce frequent professional/patient face-to-face discussions; and (5) schedule seminars and use audio / visual aids. These and other comments and suggestions articulate ESRD patients' desire and need to learn about their disease and treatment in a way that is clear and meaningful enough to support, rechannel, and guide treatment-related involvement and commitment that, in turn, may lead to improved outcomes and quality of life. Regarding such new patient educational materials as these proposed by NKF-DOQI, their ultimate value and effectiveness will depend on how the materials are implemented and on how well the health care team individualizes assessment of patient need and learning style. The success of these programs will likely differ from site to site. Overall, the results of the AAKP and the NKF studies reflect that patients need education regarding NKF-DOQI and that they feel strongly about participating in health care decisions that directly affect them. In particular, results of the NKF focus study show the need of dialysis patients for disease / treatment related education in the form of information dissemination that extends basic knowledge
into the comprehension necessary for patient application and synthesis of learning.
NKF-DOQI Implementation: The Patient Education Initiative NKF-DOQI has developed a comprehensive implementation plan that includes a patient education initiative as well as professional education and evaluation initiatives. The patient education initiative involves a coordinated effort aimed at increasing patient knowledge and skill and offering support of newly acquired knowledge. Objectives of NKFDOQI patient education activities include developing programs that focus on key messages of the four topics of the NKF-DOQI Clinical Practice Guidelines: Hemodialysis Adequacy, Peritoneal Dialysis Adequacy, Treatment of Anemia of Chronic Renal Failure, and Vascular Access. Patient education programs are designed at various educational levels to provide information, motivation, and education and to offer support. Informational programs include basic elements and core messages extracted from the content of the Guidelines. Motivational programs are designed to be interest-generating in an attempt to gain the attention of patients and family members, whereas educational programs include focused messages to help patients learn what to expect from the Guidelines. Supportive programs are designed to reinforce learning over time, which is essential in the learning process. Programming in all categories is directed toward patients and families and focuses on increasing knowledge and improving patient compliance, patient's rights and responsibilities, and helping patients become advocates of high-quality care. Both the NKF and the AAKP share the philosophy that patients have the right to be informed about their disease and treatment options so that they are able to make treatment decisions that impact on their quality of life; therefore, both organizations are committed to addressing patients' educational needs by engaging in NKF-DOQI implementation activities. Patient programs currently available from the NKF include: a Getting the Most From Your
Patient Role in Implementation ofNKF-DOQI
Treatment: What You Need To Know brochure series, a special NKF-DOQI edition of Family Focus, the renal community's newspaper published by NKF, wall charts, and a "Dialysis Report Card." The What You Need To Know brochure series includes five patient education pamphlets addressing core messages from hemodialysis adequacy, peritoneal dialysis adequacy, vascular access, treatment of anemia of chronic renal failure, and elements of all four topics that relate to pre-ESRD. These brochures will be available in English and Spanish. The special issue of Family Focus, which was published in August 1998, is dedicated exclusively to NKF-DOQI. Featured articles include the history and evolution of NKF-DOQI and its significance to patients, core messages of all four guideline topics, answers to dialysis questions frequently asked by patients and families, and tips on how to read and interpret laboratory values for patients. Four wall charts/posters, one for each NKF-DOQI topic, contain key elements of the Guideline in that particular topic and will be available in Spanish as well as English. These posters highlight concise, abbreviated, bulletpoint messages, using appropriate illustrations to help convey the printed information. These resources serve as visual learning aids to patients and families once they are displayed. The "Dialysis Report Card" is a support tool to help patients and family members become more active in their care. Use of this report card helps patients track important laboratory data and visualize where they stand in relation to established goals. A fully completed sample of this tool can be found in the Getting The Most From Your Treatment: What You Need To Know About Hemodialysis Adequacy brochure, along with instructions for use. Multiple blank tools, each of which includes space for individualized recording of laboratory data for 1 year, are available to patients and dialysis staff. Use of this tool not only allows patients and staff to monitor adequacy of treatment, it also facilitates ongoing teaching and learning discussions. In addition, educational sessions addressing NKF-DOQI were included in the Patient Program Track of the 1998 NKF Annual Meeting in Philadelphia, PA. Topics of these sessions address core messages and ap-
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plicability of the Guidelines to patient decisionmaking, dialysis adequacy, patient empowerment, and coping. AAKP has also initiated projects to help patients understand the importance of the NKF-DOQI Clinical Practice Guidelines. Printed patient education brochures that explain adequacy of hemodialysis, adequacy of peritoneal dialysis, and the use of intravenous iron are currently available to patients. The Summer 1998 edition of aakpRENALIFE, the magazine of AAKp, is devoted to the four topics of the NKF-DOQI Guidelines. AAKP also maintains a section of its monthly internet newsletter, aakpRenalFlash, to discuss the NKFDOQI Guidelines. Presentations addressing the Guidelines and the patient's role in implementation are being given by physicians and social workers to help patients learn how to partner with their health care professionals in an effort to support implementation of NKFDOQI to improve outcomes. In addition, patients were offered the opportunity to learn about the Guidelines by attending the 1998 AAKP Annual Patient Convention in Fort Lauderdale, FL. Topics addressed various medical issues surrounding patient care, including new advances in medicine, legislative issues, and family support issues.
NKF-DOQI Implementation: The Role of the Patient Whether or not the patient groups targeted by the AAKP and the NKF studies are representative of all patients, renal professionals, nevertheless, have a unique opportunity to empower their patients to improve their outcomes. Successful NKF-DOQI implementation, which ultimately will be measured in improved patient outcomes, is a shared responsibility. The entire renal community needs to be involved. Renal professionals need to be knowledgeable about NKF-DOQI to provide the necessary education that will empower their patients. Just as each patient is provided with an individualized dialysis prescription, so too must each patient be given an "individualized education prescription." Health care providers need to ask, "How much do my patients know about their treatment options and treat-
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ment plan," "At what level of learning is this particular patient," and "How can I help my patients advance their knowledge?" Only when these questions are addressed will patients get the education they need to exercise their right to make informed choices, thereby assuming some measure of control and responsibility for their health care. With understanding, patients will be able to improve their outcomes and quality of life. If you would like additional information on NKF-DOQI implementation or related programs, please contact the National Kidney Foundation at 800-622-9010, or the American Association of Kidney Patients at 800-749AAKP.
Acknowledgment The authors thank Cornelia Cavanagh, Donna Fingerhut, Patricia O'Connor, Kester Williams, and others for their contribution to this article.
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