Matthew R. Weir and Edgar V. Lerma (eds.)Kidney Transplantation2014Practical Guide to Management10.1007/978-1-4939-0342-9_16
© Springer Science+Business Media New York 2014
16. Psychosocial Issues in Renal Transplantation
(1)
University of Maryland School of Medicine, 22 S. Greene Street, N3W143, Baltimore, MD 21201, USA
Abstract
There are at least five major factors which interact to determine the success and longevity of a renal transplant. These factors include the health of the recipient, the quality of the donor kidney, immunologic factors, the competency of the transplant team, and the psychosocial milieu in which the recipient lives. Specific algorithms have been published to evaluate the medical suitability of an individual to be a transplant recipient. Unfortunately the psychosocial evaluation of potential renal transplant candidates often plays a lesser role in the decision on whether or not to list a renal transplant candidate. Despite transplanting the ideal donor kidney into a healthy recipient, long-term success is not assured. There are a myriad of psychosocial factors which can alter the path to long-term success.
The early history of hemodialysis and transplantation, the initial limited availability of these lifesaving therapies, and the effect of passage of Public Law 92-603, the End-Stage Renal Disease Program of Medicare, are reviewed. The current success of renal replacement therapies, especially transplantation, and the near universal availability of these therapies in the United States have changed societal expectation. Compared to 50 years ago, ESRD patients expect to receive dialysis, and many seek a better quality of life offered by transplantation. Today transplantation is available to a population of patients who are older, who suffer with more chronic illnesses, and who often have limited financial and psychosocial support.
The influence of psychosocial factors including cognitive deficit, depression, anxiety, psychosis, and psychiatric illness on long-term allograft survival is examined. Risk for nonadherence, the need for social support, and a realistic assessment of the cost of renal transplantation should be a cornerstone of the pre-transplant psychosocial evaluation. The effect of common behaviors such as smoking and tobacco, alcohol, and illicit drug use; lack of exercise; and obesity and the detrimental effect these behaviors can have on recipient and allograft survival must be considered. There is a shortage of donor kidneys, and society is challenged with developing fair and equitable allocation schemes for kidney allografts, a scarce medical resource. As our population ages, lives longer with chronic medical illnesses, the demand for kidneys will only increase.
Just as a thorough evaluation for preexisting medical conditions and appropriate control of these chronic illnesses should be a prerequisite for transplantation, so too a complete psychosocial review of each candidate should be obtained. Actions should be taken before transplantation to address deficiencies in family and social support, individual coping skills, and access to adequate insurance and financial resources.
There are at least five major factors which interact to determine the success and longevity of a renal transplant: the health of the recipient, the quality of the donor kidney, immunologic factors, the competency of the transplant team, and the psychosocial milieu in which the recipient lives. Specific algorithms have been published to evaluate the medical suitability of an individual to be a transplant recipient. Prospective patients are tested for cardiac reserve and the ability to survive the surgical procedure as well as for the effect of chronic illnesses such as diabetes and hepatic, respiratory, and infectious diseases. Chances for long-term survival are affected by preexisting disease burden. Younger, healthier individuals who do not carry the burden of chronic illness are the best candidates [1–3].
Donor kidneys quality depends not only on whether the donor is living—biologically related or not—or deceased but also on warm and cold ischemia times, donor age and health, and the trauma of organ procurement. Living donor kidneys, from biologically related donors, with shorter cold ischemia times have survival advantage.
Thirdly, immunologic factors play a major role in long-term graft survival. The immunosuppressive medications currently available have, over the past 40 years, diminished the frequency and intensity of rejection episodes. Long-term control of the recipient’s immune system remains key to allograft survival.
Yet despite a competent, experienced surgical team transplanting the ideal donor kidney into a healthy recipient, long-term success is not assured. Myriad of psychosocial factors play a significant role in transplantation success.
Historical Perspective: Renal Replacement Therapy for All
The first publications describing extracorporeal dialysis appeared 100 years ago in 1913. In 1924, George Haas in Germany performed the first dialysis treatment involving humans. Jump ahead 20 years to 1945, Willem Kolff of the Netherlands successfully used a rotating drum kidney to treat a 67-year-old patient with acute kidney injury. The treatment was successful and the patient survived. The Kolff rotating drum kidney became the basis for the Kolff-Brigham rotating drum kidney developed at the Peter Brant Brigham Hospital in Boston. The Kolff-Brigham kidney, developed between 1954 and 1962, became the standard of care for the time and was shipped worldwide. The Kolff-Brigham kidney can be described as the first practical dialysis machine. It was used during the Korean War in MASH units to treat soldiers with acute kidney injury. Before the standardization of this early dialysis technique, patients with severe acute kidney injury and end-stage renal disease routinely died in a number of days to weeks. The rotating drum dialysis machine was a breakthrough. Dialysis machines were expensive however. They were difficult to set up, and the treatments were costly in time and money. Few of the patients who faced end-stage renal disease at that time knew about or had the opportunity to receive dialysis treatment [3, 4].
The first successful renal transplant was performed in 1954 by Joseph Murray, MD at the Peter Brant Brigham Hospital in Boston [5]. The recipient received a kidney from his identical twin brother. The procedure proved that the surgical technique of renal transplantation was possible. However, very few individuals with end-stage renal disease have identical twin siblings. The amazing scope and built-in redundancy of the immune system hampered the expansion of transplantation as a treatment for end-stage kidney disease. Progressive advances using radiation, high dose steroids, and later, Imuran made kidney transplantation possible for a greater number of patients. However, graft survival was still only about 50 % during the 1970s [6]. Some at the time viewed transplantation merely as a bridge or brief reprieve between longer periods of maintenance dialysis for most patients. Between 1954 and 1973, approximately 10,000 kidney transplants were performed. Long-term allograft survival was limited due to suboptimal immunosuppression. Because of medical costs, access to dialysis and transplantation was reserved for a fortunate few with the means, the contacts, and the luck.
A major breakthrough came about in the early 1980s with the discovery of cyclosporine. Now with improved organ preservation, surgical techniques, and this new powerful immunosuppressive medication, 1-year survival of kidney transplants jumped from 65 to 85 % [6]. Options for the patients diagnosed with kidney failure were improving. At the same time advances were made in dialysis. Dialysis machines and membranes were improving.
Patients diagnosed with end-stage renal disease in the 1950s faced near certain imminent death. Dialysis and kidney transplantation were procedures available to very few people at only a few medical centers, and they were medical treatments beyond the financial reach of most patients. Recognizing that the average American could never pay for hemodialysis or a kidney transplantation procedure and the inequality in the access to these lifesaving treatments, the US Congress established an entitlement to the Medicare benefits for people diagnosed with permanent kidney failure in the form of the Social Security Amendment of 1972. This entitlement, which has become known as the End-Stage Renal Disease Program of Medicare, provides medical care to people with the diagnosis of permanent kidney failure who are insured or eligible for coverage under social security. This was the first legislation of its type that provided coverage for a specific health condition to all Medicare-eligible citizens. Under Public Law 92-603, patients with ESRD are entitled to Medicare if they are fully or currently insured for benefits under Social Security or are a spouse or dependent of an insured person. Consequently, entitlement is nearly universal, with 92 % of all persons with ESRD qualifying for Medicare coverage [7, 8].
The End-Stage Renal Disease Program of Medicare made lifesaving renal replacement therapy financially feasible for thousands of Americans providing hope where previously there had been none. The Medicare ESRD Program and subsequent amendments have been extremely successful and are estimated to have prolonged the life of over one million Americans who would have otherwise faced premature death [7]. Life-sustaining dialysis treatment and dialysis as a bridge to transplantation are now available to essentially all individuals in the United States.
The Changing Population of ESRD Patients and the Scope, Cost, and Size of the Medicare End-Stage Renal Disease Program
During the 40-year span of time, 1970 to present, when dialysis and transplant care were improving medicine, other medical advancements have significantly prolonged life expectancy. As a direct result, the ESRD patient population has changed. The median age of ESRD patients and the number of these individuals surviving with concurrent serious chronic medical conditions, such as diabetes, coronary artery disease, hepatitis B, hepatitis C, and HIV, have increased dramatically [9]. Initially diabetes and advanced age were viewed as a contraindication to long-term renal replacement therapy [6]. At present more than 50 % of individuals diagnosed with ESRD who begin renal replacement therapy are over 65 years of age and 45 % have some form of diabetes [6]. Since the medical profession has become so successful in managing chronic conditions in the end-stage renal disease population, now more than ever, many more patients are seeking kidney transplants.
In 1975, when the Medicare End-Stage Renal Disease Program was first available, approximately 16,000 individuals enrolled. By the end of 2009, the most recent year for which accurate figures are available, almost 399,000 patients were being treated for end-stage renal disease, and approximately 172,000 individuals were alive with functioning renal transplants [10]. The cost of providing long-term renal transplant care has grown significantly over the past 40 years. Original annual program expenditures were projected in 1972 to be only 250 million dollars per year [11]. The program has grown far beyond these initial estimates. As of 2009 it had grown to 42 billion dollars per year with 29 billion paid directly by the Medicare program. The reason for this massive balloon in cost is multifactorial. The total number of people who are diagnosed and surviving to reach ERSD annually (incidence) has increased. Over the same time, medicine has become more successful, prolonging life expectancy and keeping individuals with chronic illness healthier longer. Despite caring for a population of patients who are older and afflicted with more chronic illnesses, in terms of cost of care per patient enrolled in the Medicare ESRD Program, the cost has stabilized or decreased [12].
At its inception, the Medicare End-Stage Renal Disease Program was designed to offer a mechanism for individuals with end-stage renal disease to survive. It is estimated that over one million people have benefited from this program. Unfortunately the incidence rate of end-stage renal disease each year has increased progressively over the past 15 years. Although there may be some stabilization in this number, it remains at 350 cases per million per year. Today, in 2013, with more than one in ten Americans—some 20 million people!—having some form of chronic kidney disease, the burden to society of caring for all these patients is increasing [10, 12].
Kidneys Suitable for Transplantation: A Scarce Medical Resource
Society has modified its practices to meet the economic challenges in providing health care to individuals with end-stage renal disease. Under Public Law 92-603, the ESRD Medicare amendment, individuals with renal failure can receive treatment.
The cost per patient of this program is decreasing at the same time that there is greater emphasis on quality initiatives designed to guarantee standard of care treatment. Furthermore, transplantation now makes economic sense to society. The yearly costs for treating a patient on HD are nearly triple the costs of maintaining a transplant patient [13]. Renal transplantation has become so successful that first year graft survival exceeds 90–93 % [14]. Recognizing the improved quality of life and survival benefit of renal transplantation, increasing numbers of individuals are seeking kidney transplants. While a mechanism exists for patients to be maintained on dialysis while awaiting a kidney and funding exists to cover the cost of transplantation, there is a critical shortage of transplantable kidneys.
In 2012 there were over 117,000 patients waiting for a kidney transplant in the United States. During the same time, only 28,000 renal transplants were able to be performed [15]. One in every five individuals on the kidney transplant waiting list will die before they receive a kidney. Who, among the ever-increasing number of patients being evaluated for renal transplantation, should be listed? Can society offer to everyone, regardless of preexisting chronic medical conditions, age, life expectancy, psychosocial support system, competency, and ability to adhere to a complicated medical regimen, the same access and opportunity to receive a kidney transplant?
Can a 68-year-old obese individual with diabetes, hypertension, and coronary artery disease have the same expectation to receive a kidney transplant as a 22-year-old with end-stage renal disease secondary to polycystic kidney disease? Currently organ allocation is based primarily on the length of time on the transplant waiting list.
Several years ago, an effort was made to develop a more equitable distribution of organs to the ever-expanding list of older and more chronically ill patients with renal failure based upon anticipated life years from transplant (LYFT). The concept was that older recipients with a greater burden of chronic illness would be offered kidneys from older donors given the statistically shorter life expectancy. Organs from younger donors would be directed to younger recipients with less burden of chronic disease. In this way society would obtain the maximal number of years of function from the available pool of donated kidneys. In summation it was hoped fewer “years of viable function” would be lost as recipients died with functioning grafts [16]. The proposal was never accepted.
Though dialysis does prolong life, evidence suggests that the quality of life for these patients is poor. The success of transplantation has created an expectation in society that not only can individuals with end-stage renal disease be kept alive on dialysis, but they also can seek a new life with a kidney transplant. Unfortunately, all too often, patients are unaware that transplant recipients face a new chronic illness, one which is often unrecognized pre-transplant, the burden of a life on maintenance immunosuppression.
Evaluation of Potential Renal Transplant Recipients
It has clearly been established that transplantation is the best option for most individuals receiving renal replacement therapy. Quality of life measures, survival, and even medical costs favor transplantation over maintenance hemodialysis. Despite all this, the decision to transplant some candidates is not straightforward. Because in 2013, transplant candidates are often older with concurrent chronic illnesses [16], the medical community needs to understand which medical and psychosocial requirements must be addressed if these transplant patients are to enjoy long-term success.
Specific algorithms have been published to evaluate the medical suitability of an individual to be a transplant recipient. Patients are tested for cardiac reserve and the ability to undergo the surgical procedure. They are examined for the presence and burden of chronic illnesses such as diabetes and hepatic, respiratory, and infectious diseases. Medical decisions are made based upon a patient’s chances of surviving the surgery and not being adversely effected by lifelong immunosuppressive therapy. For many medical conditions, published data exists to document and guide the medical decision-making process [1, 2, 17].
For the psychosocial evaluation, the patient’s cognition, mental health, psychiatric stability, medical nonadherence, history of substance and tobacco abuse, eating disorders, and presence of obesity are considered. The patient’s insurance, finances, and available social support from family and friends are given equal consideration. While the medical selection criteria have been well defined, there has been a paucity of studies that document evidence-based criteria for acceptable psychosocial risks for transplant candidates [18]. The goal of any evaluation is to use evidence-based criteria, whether it be in the medical realm or in the psychosocial realm, to define and identify individuals who have the best opportunity for a successful long life after transplantation. Unfortunately, many psychosocial parameters do not have the same evidence-based absolute contraindications and objective measures available for decision making as in the fields of cardiac medicine, infectious disease, and cancer.
Cognitive Function, Mental Retardation, and Transplantation
Mental retardation is defined as an IQ of less than 70 assessed by the Wechsler Intelligence Scale. A basic intellectual capacity is required if the patient is to learn the skills and knowledge necessary to maintain a healthy lifestyle. Despite this, many mentally retarded individuals have been successfully transplanted and done very well. More than in any other group, however, the success of transplantation in this population has been totally attributed to the social support provided to each of these individuals. The presence of an adequate, committed, and lifelong social support caregiver or group capable of 24/7 monitoring and assistance must be established before mentally retarded patients are transplanted. Without an identified support system willing and capable of giving individualized care, transplantation should not be undertaken.
Ideally every transplant candidate should have the requisite IQ and level of cognitive function to understand why they are being offered a kidney transplant. Severe cognitive defects are most often the result of birth defects, structural brain injury, cerebral palsy, and anoxia. Whenever possible, informed consent for the transplant should be obtained from the patient. If unable to give legal informed consent, assent and acceptance of the procedure should be sought. At minimum, patients with impaired cognition should be willing to accept and not resist the medical care. Posttransplant, those with greater cognitive impairment will require greater supervision and monitoring. This can be provided by a combination of a group home, monitored day care, or devoted social and family support. Even the most challenged individuals with significant cognitive impairment can benefit from renal transplantation. Cognitively impaired patients can be successful transplant recipients if they are cooperative, if adequate support is available to ensure medications are administered on time, and if lab and clinic appointments are kept [19].