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PART II
Patients and Providers

The IOM committee to study the Medicare ESRD program places great importance on the ESRD patient as the appropriate focal point of policy. In this section, this perspective is expressed in several ways. Chapter 2 reports on the results of three ESRD patient focus groups convened to provide the committee direct access to patient views on their treatment. Chapter 3 addresses several major ethical issues that confront physicians and other caregivers as the patient population grows and changes in composition.

Chapters 4 and 5 deal directly with the epidemiological changes of the patient population. Chapter 4 provides general background and presents projections of the patient population to the year 2000 and analyzes the mortality experience of the ESRD patient population. Special attention is given in Chapter 5 to elderly, pediatric, diabetic, hypertensive, and black and other nonwhite renal failure patients. These chapters reflect the diversity of the ESRD patient population and the way in which it has changed over time.

Finally, in this part, Chapter 6 examines the structure of the ESRD provider institutions: kidney transplantation centers as well as outpatient dialysis units.



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Kidney Failure and the Federal Government PART II Patients and Providers The IOM committee to study the Medicare ESRD program places great importance on the ESRD patient as the appropriate focal point of policy. In this section, this perspective is expressed in several ways. Chapter 2 reports on the results of three ESRD patient focus groups convened to provide the committee direct access to patient views on their treatment. Chapter 3 addresses several major ethical issues that confront physicians and other caregivers as the patient population grows and changes in composition. Chapters 4 and 5 deal directly with the epidemiological changes of the patient population. Chapter 4 provides general background and presents projections of the patient population to the year 2000 and analyzes the mortality experience of the ESRD patient population. Special attention is given in Chapter 5 to elderly, pediatric, diabetic, hypertensive, and black and other nonwhite renal failure patients. These chapters reflect the diversity of the ESRD patient population and the way in which it has changed over time. Finally, in this part, Chapter 6 examines the structure of the ESRD provider institutions: kidney transplantation centers as well as outpatient dialysis units.

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Kidney Failure and the Federal Government 2 Perspectives of ESRD Patients The IOM ESRD Committee believes that people with renal failure should be the primary concern of Medicare ESRD policy. The committee also believes that patients should be encouraged to participate actively in all aspects of their care. Such participation can be aided by providing patients with understandable, timely, and ongoing information about all aspects of treatment; ensuring patient choice of providers through competition among facilities; determining patient preferences for clinical options; and assessing patient satisfaction with the outcomes of care. The committee emphasizes the importance of patients' rights and responsibilities in both the philosophy and the operations of treatment units. The committee wished to obtain information directly from ESRD patients on their experience. A patient survey was considered but rejected on feasibility grounds. As an alternative approach, the committee held three patient focus groups.1 The objective of the focus groups was to explore kidney patients' experiences in receiving treatment services and to identify opportunities for improvements in the ESRD program. The three patient focus groups reflected diversity in age, sex, modality, time on treatment, type of facility, and home setting. Each group included 10 to 15 patient-participants, some of whom had a family member present. Each session lasted between 3 and 4 hours and was taped for later transcription. They were moderated by Edith T. Oberley, President of Medical Media Associates, Inc., who has more than 17 years of experience in the renal field as a professional in medical education/communications and as a home hemodialysis partner. In an effort to avoid a regional bias, the IOM project staff selected Washington, D.C., Irvine, California, and St. Louis, Missouri, as sites. For each region, physicians, social workers, ESRD network personnel, and leaders

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Kidney Failure and the Federal Government of the national organizations were identified and asked to nominate patients who represented a cross-section in terms of treatment modality, ethnicity, length of time on treatment, age, treatment center type, and home setting. Nominations were reviewed by staff of the IOM and Medical Media Associates, and potential participants were contacted to generate a list of 15 participants for each group. Participants received an honorarium of $50 and were reimbursed for travel expenses. Each focus group addressed two major topics: experiences with renal failure and the economic effects of kidney failure. The experiences with renal failure occupied more than 50 percent of each discussion and encompassed relations between patients, physicians, and staff; patient education; available services; and the effects of erythropoietin (EPO). For each topic, the moderator encouraged participants to reflect on the ideal situation—such as the ideal doctor-patient relationship, the ideal educational program—rather than focusing exclusively on what was lacking. The major findings are outlined below. EXPERIENCES WITH RENAL FAILURE Patient Relationships with Physicians and Staff Kidney failure patients require continuing treatment over their entire lives. Consequently, they spend a lot of time with their physicians and with other medical professionals. Most dialysis patients see health professionals three times each week at a treatment unit where they spend 3 to 4 hours on each visit. Home dialysis patients also have frequent telephone contact with their physician or with a nurse. Individuals wanting a transplant often have to wait for a kidney. They must dialyze while waiting, during which extensive presurgery work-up is conducted. Even a successful transplant often involves extensive telephone contact with the transplant center as well as continued follow-up care from a nephrologist. If a transplant recipient's body attempts to reject a kidney, the clinical management of the rejection process intensifies the interaction between the patient and the health care team. All of these situations add up to a lot of time that patients spend with physicians and staff, and consequently these relationships are a very important part of the treatment process. The importance of a good patient-physician relationship cannot be overemphasized since it is central to effective treatment. The doctor holds the key to the ongoing provision of life support to the patient, and patients are well aware of this power and the high degree of dependency implicit in the relationship. The doctor is not only "captain" of the treatment team, but also the very key to life support. Participants wanted their physicians to spend more time with them and reassure them as well as provide them with

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Kidney Failure and the Federal Government advice, guidance, information, and treatment. The participants reporting a good relationship with their physician were clearly committed to him or her. Prior to kidney failure, you go to a doctor, and you're choosing this doctor, and he's providing information and a service for the fee, or whatever, and there's no dependency. This is a big difference. Once you go into kidney failure, the doctor holds the key to life. You can't get life support without the doctor, and it becomes a power that is sometimes abused. [Irvine, California] Normally, I think, in the beginning, a dialysis patient puts his trust in the doctor's hands. It's on the basis of this person's words that our life changes. We trust his word, not only in the diagnosis, but in what's going to happen—prognosis and treatment. [Irvine, California] Patients described the ideal physician-patient relationship as a caring partnership in which a doctor would discuss the issues and options with them so that a mutual decision could be reached that would help to improve the patient's quality of care. Most patients recognize their dependency on their physicians and make it clear that they don't want this trust abused. Conflict often exists between a beneficence model of physician behavior, however, and an autonomy model of patient rights as patients attempt to assert control over their lives. Beneficence implies the responsibility of the physician to do what is best for the patient—"do no harm" is its obvious corollary. Patient autonomy, an equally strong value in our society, sometimes conflicts with the physician's view of what is best for the patient. There are constant decisions to be made in ESRD care, both major and minor. Physicians might prescribe behaviors (diet, medication, frequency and duration of dialysis, advisability of transplantation, and others) that are intended to correct the patient's metabolic imbalances and lead to an optimal medical condition. Patients may, at times, prefer less optimal medical conditions to more freedom or control over aspects of their daily lives. Ultimately, an autonomous patient may even choose to terminate dialysis, in contradiction to the physician's beneficent motive of prolonging life. Some of these conflicts are inevitable and can be handled better if understood on this basis of a conflict or different values. But in many cases, resolution can be achieved through shared decision making and an explicit attitude of respect for the patient's choices and values. Foremost in this process is the need for patient education and for full communication and uncoerced informed consent of the patient concerning changes in therapy and recommendations. Channels of communications must allow questioning of the physician on numerous occasions. Patients' changes of mind must be anticipated as psychological adjustments occur and life changes intervene. This shared-responsibility model demands time, openness, and flexibility from the health care professional, but its rewards are significantly lessened

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Kidney Failure and the Federal Government frustration with patient "noncompliance" and greater personal satisfaction in patient care. It doesn't matter where he is, or what he has to do, if you ask him a question and it takes him 2 hours to answer it—he'll give you the 2 hours. [Washington, D.C.] Another thing he does, he takes up time to explain. After examining you, he sits down on a chair and he takes the time. How are you doing? What are you doing? How's your social life, or home life? [Washington, D.C.] [The doctor] informs you and then you can make the choice. [St. Louis, Missouri] He provides individualized treatment and is flexible on the basis of my input. He's willing to change a medicine based on my input. [Irvine, California] In some cases, however, patients expressed strong disappointment or resentment about their interactions with their physician. They spoke of doctors towering over them during rounds rather than pulling up a stool for a face-to-face conversation. Brevity of contact, a lack of physical touching, and a resistance to patient questions about treatment decisions characterized the unsatisfactory relationships. The doctors never even touched me, and I can't believe that. It's just reassuring that the doctor comes in and puts his arm around you, or holds your hand, or just some kind of touching. The only physical contact I had was with the stethoscope. [Irvine, California] The general impression I had of the nephrologist—and we've met more than a few—was that they were on automatic pilot. There wasn't an individual response to the person on dialysis. There was a shocking absence of being a patient advocate. [Irvine, California] My biggest concern is they never slow down long enough to let you even say anything. They are just kind of like jackrabbits. They hit the chart and they start in the room and there are like 16 or 18 patients and they just walk from chart to chart and if you try to say anything, they are gone. They close the book and they are gone before you can open your mouth. [St. Louis, Missouri] Some patients expressed concern over continuity of care among different physicians, particularly when the patient must be hospitalized. Just as you seem to get confident with this doctor, he knows how you are acting, what medicines he is putting you on, how you are reacting to them ... poof, he is gone. And then you get this other guy, and by the time you get him all where you got confidence and you know he knows what he is doing, he's gone [too]. [St. Louis, Missouri] But if you go to the hospital to the transplant unit, you will see somebody different every time because there are interns in there all the time. They have what they call a "fellow," and he is there. He is working just on kidneys, but there are interns rotating all the time. So I feel very uneasy about that, because every time you go in

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Kidney Failure and the Federal Government you start all over from the beginning and say "this is my situation," and I don't like that. [Washington, D.C.] There is always a different intern there who is not even familiar with what my problems are. [Washington, D.C.] Patients tended to be highly supportive of their unit's staff. They are aware of the staff's crucial role in administering the ongoing life-giving treatment, as well as the effects of financial pressure, time constraints, and increased turnover on how well they do. But most everything I do, I go directly to him, the nurse. He is very helpful, very responsive to my needs. [Washington, D.C.] We have access [to members of the health care team]. And our nurses and technicians are very good. I don't have any problem with them. They are very good. [Washington, D.C.] At least at my facility, I can say that they have improved, and the progress is in the area that we have talked about—in the area of encouraging patients to talk with other patients, peer group support and everything, and they're very much behind the Patient Advisory Group. [Irvine, California] I feel the government has to understand that no matter how big the doctors are, we are not being kept alive by these doctors. And the ones who educate us and keep us alive are the [staff at the] units. And with all our heart and soul, if we could get this to be understood, and [staff] could get more money, we would end up [better off]. [Irvine, California] Patients expressed concern about increasing staff turnover, the nursing shortage, and the increased prevalence of technicians in patient-care functions. Their primary concern is the effect that these trends have on their quality of care. For example, some patients are concerned that the training that technicians receive is not as complete as it should be. Participants also raised concerns about what they perceive as a lack of recognized standards of care. In general, they would like to see an increase in the staff/patient ratio so that staff can return to or adopt a more nurturing role. I can see newer faces all the time coming in, and the personal relationship between the doctors and the nurses has significantly decreased over that period of time because of the fact that they have more patients to deal with.... It seems that the more they have to do, the less that they can relate to you and your problems personally. [Washington, D.C.] After getting to know a nurse who's good, you start hearing that they're going to quit because of lack of money—it's unnerving. You finally get somebody who can stick you right [with the needles], and the next thing you know, they're looking for another job because of money. [Irvine, California] If you want to be trained to go home, they tell you they have a shortage of nurses

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Kidney Failure and the Federal Government and only one nurse handles it, and that nurse has been out for 3 months, and you have to wait until that nurse comes back. [Washington, D.C.] Patient Education Patients generally agreed that education is vital to them at all stages of their treatment. It alleviates fear, offers hope, and gives them the tools they need to take active and effective roles in their treatments. Effective patient education at the time of kidney failure is especially important. Knowledge can dissipate fear. When you know where you stand, when you know what your options are, when you know what choices you can make, then you can develop your sense of self to know what you're doing. [Irvine, California] With the education, I think that you become a partner in your healing, in your treatment. You realize that you have some control over what happens. It brings—for me it brought just a cooperative kind of spirit. I mean, I knew I wanted to stay alive, but then it was just a wonderful feeling of support and cooperation and there was material there, and questions and answers. It was like settling in to something, rather than having this big massive unknown out there. [Washington, D.C.] We have to know right from the outset that we're not going to die, and that there are options and that it's okay to be healthy and it's okay to be functional, and that you can do it. [Irvine, California] Most participants reported that they had received some kind of written educational information about their condition and treatment. Nearly all ranked information about the details of daily care, nutrition and diet, different treatment modalities, finances and insurance, and family issues as very important. Participants in each group agreed, however, that the information they received was often inadequate. I didn't have this information when they started with me, but there is a book now that goes from beginning to end. It starts with the different kinds of kidney diseases. It talks about the medication you have to take. It tells you different kinds of treatment like hemo and CAPD, transplant, different options you can have and what is involved in each of those. It talks about personal relationships with family, friends, how they are going to perceive you, what is going on. It also talks about how you can take care of yourself, or if you don't feel you can, the places you can go. I think it is important that they have something comprehensive that covers all of those details, because I did get information, but I didn't get anything like that. [Washington, D.C.] Participants clearly felt that the unit staff and physicians have responsibility for educating their patients. Participants reported that the physician has a particularly strong influence at early stages. People who hang out their shingles as caring for patients with end-stage renal disease ... need to be given the responsibility to educate their patients. [Washington, D.C.]

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Kidney Failure and the Federal Government After he [my doctor] gave me the literature and told me what was actually happening in my body, then I took an interest. [St. Louis, Missouri] She [the doctor] sat down with us for about 3 hours and explained every little step right down the line and tried to put you at ease to make you realize this is not the end of the world, that you can still live a productive life. [Washington, D.C.] Focus-group patients contrasted physicians and staff who did not provide educational materials unfavorably to those concerned that patients take active roles in decision making. They wished the doctor and the staff to take an active teaching role, not just give them a brochure or video. Many patients suggested that inadequate education conveys the message that doctors and staff members don't care. Participants agreed that the setting and format in which educational materials are provided are important. It was a brand new unit, a marvelous unit. They had printed material and booklets, they had movies, they had people come in. They were wonderful. And I felt that the world had been lifted off my chest, I really did. [Irvine, California] The timing of educational programs is also important. Some patients prefer information at an early stage, some later in their treatment. Some are eager to receive information even before their first dialysis, others go through a lengthy period of denial and anger. In light of these differences, focus-group participants agreed that information has to be available when an individual is ready to receive it. I think that it [education] has to be done before, during, and after [beginning] treatment. [Washington, D.C] I was too shook up to respond too well at the beginning to videos or written material. I had to calm down to absorb that. [Irvine, California] In my case a lot of that information that I got, it was not to the point. I didn't want it, I was so angry—I'd throw it in the trash. [St. Louis, Missouri] Education cannot stop once a patient is familiar with the routine of dialysis. Patients want ongoing information about the latest findings that may affect their treatment. High flux, reuse, EPO dosage calculations, antirejection drugs for transplant patients—all are controversial topics in the dialysis field that are of interest to patients as well as professionals. Many focus-group participants were aware of these and other current issues, some through their own efforts to stay informed, others because of a physician or staff commitment to educate them. Many participants strongly urged that family members be included in the education process, since they are often an integral part of the patient's support. I think that even children [need information] ... you don't have to go into deep details, but if you're confused as a patient, they're really confused about what's

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Kidney Failure and the Federal Government going on. What's happening to my Dad? What's happening to my Mom? [Irvine, California] There was a lack of family education. Our children had no idea what was going on. [parent, St. Louis, Missouri] There should be a program for the whole family including the siblings to learn what these [patients] have to go through. [parent, St. Louis, Missouri] Many participants emphasized the value of education by other patients, through both individual counseling and self-help groups. Seeing and talking to a knowledgeable patient who is doing well can make all the difference to a new patient. Self-help groups can provide a forum for patient discussions about ongoing research, grievances at the unit, family problems, and other issues. One focus group suggested that a treatment unit should help organize, or at least not hinder, their organization. If it wasn't for other patients I wouldn't have learned what I learned. [Washington, D.C.] ... you get to understand that you are not the only person in the world with this specific problem; that other people from all walks of life have the same type of problem. [Washington, D.C.] ... to have someone come out and sit and talk to you at home and explain to you [how you can lead] a very active life on dialysis. Just coming to grips with it would have been a lot easier. [Washington, D.C.] Patient-Related Services Kidney failure influences nearly every aspect of a patient's life—from diet to work to family—and the services that patients deem important reflect a need for assistance in all these areas. Among the services that participants reported as most important were education, flexible hours, family counseling, information about finances, transportation, psychological counseling, vocational and occupational training, appropriate isolation of infectious patients, and the availability of peer support groups. Nearly all participants indicated that they were not receiving some service or services that they ranked as very important on the questionnaires. They will not come to the door to pick the person up. The person has to make his way from his house to the cab or transportation, and then from that door into the unit. They don't help the person. A lot of time these people cannot make it on their own, especially after dialysis, to make it from their ride into their house. They just cannot get in there. That is a major problem that we have no way to know how to solve that at this time. [Washington, D.C.] I've bled on the subway a few times, fainted on the subway a few times, and I finally learned that I could afford the taxi rather than the embarrassment. But there

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Kidney Failure and the Federal Government wasn't any money available, because I wasn't rich enough and I wasn't poor enough. [Washington, D.C.] I think that vocational and occupational training should be good. Being I just had the transplant, I am really anxious to enter the job market now. There is a lot of resistance on the part of the party who is hiring me because of my condition. The occupation I had previously, I am not really suited for any more. [St. Louis, Missouri] As it is, patients must be pioneers, finding information in the wilderness. [Services worksheet] Effect of Erythropoietin Patients in all three focus groups reported that the effects of EPO in its first year of use had been substantial. Most participants reported an impressive improvement in health and energy as a result of taking EPO, although a few participants had not yet heard of it. Many patients on EPO no longer experience extreme fatigue, and employment becomes a more realistic option for them than ever before. Consequently, many patients expressed the desire to return to work. In fact, some mentioned privately that they were working, but not reporting the income because of fear of losing their Social Security disability payments. Others discussed their current efforts or future plans for job hunting. I have to honestly say that [EPO] has been a big determining factor in my decision to return to work. I am not sure I could have hung in there before, where now I feel that I can hold a full-time job again. I am not sure 6 months ago that I really could have. [Washington, D.C.] The introduction of EPO therapy has resulted in substantially higher energy levels for many patients. It may now be appropriate to deal with rehabilitation issues more directly than has been done in the past. EPO may have shifted attention to economic and social barriers to employment and rehabilitation and away from the physical limitations of patients to pursue active, productive lives. ECONOMIC EFFECTS OF KIDNEY FAILURE There is inadequate documentation about the extent of the economic effects of kidney failure on patients and their families. The report of Campbell and Campbell (1978), now more than a decade old, is a notable exception. All patients openly discussed the financial hardships experienced since renal failure; most reported a change in occupation and nearly all reported a decrease in personal income—''substantial'' in many cases. Kidney failure, it was agreed, had changed their families' ways of handling finances.

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Kidney Failure and the Federal Government Kidney patients acknowledge that they are fortunate enough to have Medicare support for 80 percent of their basic treatment, although some necessary services, such as certain medications and transportation, are not reimbursed. Even so, the financial hardships reported by these participants were serious. Half of the participants reported that out-of-pocket expenses related to their treatment, such as medications (including vitamins) and transportation, were not co-paid by Medicare or insurance. Many also reported difficulty in paying for and/or qualifying for private insurance and indicated that the financial hardship of renal failure was more difficult than the medical hardship. If you don't do anything, you can get help. But if you want to work and you want to pull your weight, you can't get any help. That is the problem. [Washington, D.C.] If only I could make at least two-thirds of what I'll be receiving from Social Security disability insurance, I would like to work. (Washington, D.C.] It takes a tremendous amount of psychological and physical energy to maintain employment. For those who remain on SSI or SSDI, the disincentives to employment are outrageous, so why put forth the energies to get out of dependency. [St. Louis, Missouri] It's a real Catch-22 because I've got an 11-year-old son and a 13-year-old daughter who are both going to school and the way things work out it's better for me to stay on dialysis and disability than it is to work right now. It would cost me more to hire somebody to come in and watch my kids than I could make going back to work versus what I get on disability. [St. Louis, Missouri] The major concerns identified by patients as sources of financial difficulty included the following: disincentives to work resulting from Social Security disability regulations; employer reluctance to hire people with a chronic condition; and problems in keeping or obtaining private health insurance. Disability payments are not high enough to support a family. Those who want to return to work often cannot find jobs that bring in more income than their disability, resulting in forced unemployment. The financial impact on me has been the most debilitating—and stressful. More than losing my kidneys. [Irvine, California] And then came the dialysis, and I still finished my doctorate and so forth, and after the transplant then when I got well enough to start looking for jobs, whether it's because I'm blind or I've had a transplant—and I happened to be of the group that tell both—I applied for probably 1,000 jobs in this area, or more, probably 2,000 jobs, and I'm still not full-time employed. Right now is when I am receiving the crunch because the student loans are due.... Here I am with a doctoral degree from one of the major universities in the area, and a friend has bought my food for 3 months. [Washington, D.C.] As a parent of a dialysis patient, I have not been able to work until these past few months when my child was actually old enough and mature enough to ride a cab to

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Kidney Failure and the Federal Government and from treatments. One income for five people is not enough to make ends meet. (St. Louis, Missouri] I lost my job, my home. Now I'm trying to raise two kids so I'm really stuck to where I can't work because I've got two kids at home that I'm trying to raise. [St. Louis, Missouri] I want to go back to work. I feel that I could handle it, but I can't afford to. They told me that if I make more than $741 a month, I lose my MediCal, and then I'm responsible for 20 percent of my payment to the dialysis unit, plus all of my medical expenses, and it ends up not being worth it. [Irvine, California] What I found out years later [from] the person that was my boss at the time is the insurance company came in and said, "We've spent $100,000 on this guy in the last quarter. We can't drop him off the policy, we're going to drop your whole policy for 100 employees." So guess who left? I spent about a year looking for a job after that and finally gave up. [St. Louis, Missouri] I think a lot of employers are reluctant to hire people that are disabled. They don't want to add them to their health insurance policies. They don't want people working part-time. They want you either there all the time, or not at all. [Irvine, California] These findings suggest that the issue in most immediate need of attention is employment. Although some participants in each groups are employed, many others have been prevented from working by a number of barriers—including the economic disincentives to employment imposed by Social Security disability regulations. Although the economic disincentive is the most frustrating for patients, there are other barriers to employment, including the lack of flexible dialysis hours in many units, the shortage of useful vocational and occupational training programs, problems of obtaining and maintaining health insurance, and the inaccessibility of education and support services. Nearly all participants expressed frustration at the limitations imposed on earnings by the Social Security disability programs. With the advent of EPO, patients are finding that fatigue is not the barrier to work that it used to be. The real disincentive, participants reported, is economic. More than half reported that limits on earnings imposed by Social Security disability regulations had influenced their decisions about working; half also said that they would return to work if these regulations were changed. Conclusions The focus groups were intended to obtain information directly from patients on their experiences with renal failure and to identify opportunities for improvements from their viewpoint. The quotes of patients speaking for themselves accomplish this. They reveal that patients value effective rela-

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Kidney Failure and the Federal Government tionships with their physicians very highly and place great emphasis on continuing education about their disease and its management, as a mechanism for participating in clinical decision making and means for alleviating fear and enhancing interactions with their families and with health professionals. These statements by patients also indicate that they can serve as a key source of information on the systems of care and on how federal regulations affect patients' lives. The economic effects of kidney failure on the lives of patients and their families are substantial, a feature common to patients with chronic diseases. Although poorly understood, these effects should be acknowledged and policies developed to address them. In particular, ESRD focus-group participants identified employment opportunities and problems, difficulties associated with private health insurance, the frequent dependence of ESRD patients on Social Security disability, and the disincentives that system raises to pursuing employment as matters of great concern. The barriers to rehabilitation—physical, economic, and social—are important to patients. Ways should be sought to restore patients to good functional and health status and, wherever possible, to provide incentives to encourage them to return to work and to productive social activity. The policy options to address the unintended interactions of Medicare and Social Security disability policies have begun to be addressed by Congress, appropriately in the context of disability and chronic disease. Given the impact of EPO on patients' energy levels, it may be quite timely to address rehabilitation afresh. The committee believes that this set of issues deserves renewed attention. Many of the issues discussed by the patient focus groups are addressed in various sections of this report. Not all were addressed by the committee, however, because they did not bear directly on its charge and to do justice to them would have required a substantially greater effort. They clearly deserve extended examination. NOTE 1.   A focus group is a structured discussion led by a moderator and designed to elicit information from participants, who interact with each other. Although focus groups cannot provide data that are generalizable to the entire population, they allow researchers to identify attitudes, collect information, and generate hypotheses that may later guide quantitative research, such as surveys. REFERENCE Campbell JD, Campbell AR. 1978. The social and economic costs of end-stage renal disease. N Engl J Med 299:386–392.