Excluding patients from transplant due to social support: Results from a national survey of transplant providers.

Social support is used to determine transplant eligibility despite lack of an evidence base and vague regulatory guidance. It is unknown how many patients are disqualified from transplantation due to inadequate support, and whether providers feel confident using these subjective criteria to determine eligibility. Transplant providers (n = 551) from 202 centers estimated that, on average, 9.6% (standard deviation = 9.4) of patients evaluated in the prior year were excluded due to inadequate support. This varied significantly by United Network for Organ Sharing region (7.6%-12.2%), and by center (21.7% among top quartile). Significantly more providers used social support in listing decisions than believed it ought to be used (86.3% vs 67.6%). Nearly 25% believed that using social support in listing determinations was unfair or were unsure; 67.3% felt it disproportionately impacted patients of low socioeconomic status. Overall, 42.4% were only somewhat or not at all confident using social support to determine transplant suitability. Compared to surgical/medical transplant providers, psychosocial providers had 2.13 greater odds of supporting the criteria (P = .03). Furthermore, 69.2% supported revised guidelines for use of social support in listing decisions. Social support criteria should be reconsidered in light of the limited evidence, potential for disparities, practice variation, low provider confidence, and desire for revised guidelines.

AST/ASTS workshop on increasing organ donation in the United States: creating an "arc of change" from removing disincentives to testing incentives.

The American Society of Transplantation (AST) and American Society of Transplant Surgeons (ASTS) convened a workshop on June 2-3, 2014, to explore increasing both living and deceased organ donation in the United States. Recent articles in the lay press on illegal organ sales and transplant tourism highlight the impact of the current black market in kidneys that accompanies the growing global organ shortage. We believe it important not to conflate the illegal market for organs, which we reject in the strongest possible terms, with the potential in the United States for concerted action to remove all remaining financial disincentives for donors and critically consider testing the impact and acceptability of incentives to increase organ availability in the United States. However, we do not support any trials of direct payments or valuable considerations to donors or families based on a process of market-assigned values of organs. This White Paper represents a summary by the authors of the deliberations of the Incentives Workshop Group and has been approved by both AST and ASTS Boards.

Standardization of terminology for episodes of hematopoietic stem cell patient transplant care.

The nomenclature describing hematopoietic stem cell transplantation has evolved, adding precision and definition in research and regulation. The lack of coordination and standardization in terminology has left some gaps in the definition of episodes of clinical care. These voids have caused particular problems in contracting for payment and billing for services rendered. The purpose of this report is to propose definitions for cell products, cell infusions, and transplantation episodes.

Income of living kidney donors and the income difference between living kidney donors and their recipients in the United States.

Disincentives for living kidney donation are common but are poorly understood. We studied 54 483 living donor kidney transplants in the United States between 2000 and 2009, limiting to those with valid zip code data to allow determination of median household income by linkage to the 2000 U.S. Census. We then determined the income and income difference of donors and recipients. The median household income in donors and recipients was $46 334 ±$17 350 and $46 439 ±$17 743, respectively. Donation-related expenses consume ≥ 1 month's income in 76% of donors. The mean ± standard deviation income difference between recipients and donors in transplants involving a wealthier recipient was $22 760 ± 14 792 and in 90% of transplants the difference was <$40 000 dollars. The findings suggest that the capacity for donors to absorb the financial consequences of donation, or of recipients to reimburse allowable expenses, is limited. There were few transplants with a large difference in recipient and donor income, suggesting that the scope and value of any payment between donors and recipients is likely to be small. We conclude that most donors and recipients have similar modest incomes, suggesting that the costs of donation are a significant burden in the majority of living donor transplants.

Factors influencing the acceptance of toenail-to-fingernail transfer.

The aim of this study is to determine the factors influencing the acceptance of toenail-to-fingernail transfer. A total of 240 patients were divided into four groups according to severity of nail injury. Half (expensed informed [EI] group) were informed about the expenses (about $9,000) before the interview; the other half were not informed (the expense not-informed [ENI] group). The participants were asked to answer yes or no to the question "If you lose your fingernail and it can be reconstructed by transferring your toenail like this figure, will you undergo surgery? If you want it or not, please choose the reason for your choice." In the EI group, 68.3% accepted the surgery. In the ENI group, 85.0% accepted the surgery. There was a significant difference between the EI and ENI groups (p = 0.002). In the EI group, the age of the surgery acceptance group (36.9 ± 11.8) was significantly lower (p = 0.004) than that of the surgery rejection group (44.5 ± 15.5). The young age group wished to accept the surgery irrespective of the expenses, yet the old age group hesitated to have surgery when informed about the expenses. We think the risk acceptance for toenail-to-fingernail transfer mostly depends upon the expense.

House panel denies exception for drug.

KIE: The National Organ Transplant Act (H.R. 4080) emerged from the House Ways and Means health subcommittee minus the so-called "cyclosporine amendment," a provision which would have extended Medicare coverage to the long-term use of immunosuppressive drugs for organ transplant recipients. Cyclosporine became a focus of dispute because of its high cost. Opponents of the deleted provision argued that it would break the precedent under which Medicare pays for drugs only while a patient is in the hospital. Committee members report that pressure from physicians and patients is building to revive the deleted proposal.^ieng

Organ trafficking and transplant tourism: a commentary on the global realities.

The extent of organ sales from commercial living donors (CLDs) or vendors has now become evident. At the Second Global Consultation on Human Transplantation of the World Health Organization's (WHO) in March 2007, it was estimated that organ trafficking accounts for 5-10% of the kidney transplants performed annually throughout the world. Patients with sufficient resources in need of organs may travel from one country to another to purchase a kidney (or liver) mainly from a poor person. Transplant centers in 'destination' countries have been well known to encourage the sale of organs to 'tourist' recipients from the 'client' countries.

Influence of the psychological state of relatives on the quality of life of patients at 1 year after transplantation.

We analyzed the influence of the psychological state of relatives on the quality of life of patients at 1 year after transplantation. We selected 2 groups: 94 transplant patients (47.9% liver, 40.4% kidney, and 11.7% heart) of mean age 49.42 years (SD, 11.21 years) and their close relatives (n = 94). All participants were assessed at 1 year after transplantation, using a Psychological Survey (both groups); the Hospital Anxiety and Depression Scale and the Quality of Life Questionnaire (transplant patients); and the Leeds Scales for the Self-Assessment of Anxiety and Depression (relatives). The results revealed that transplant patients whose relatives had more symptoms of anxiety and depression at 1 year after transplantation showed a decreased quality of life.

Pediatric liver transplant recipients: mortality analysis over 20 years.

Orthotropic liver transplantation (OLT) has become standard and accepted care for pediatric patients with end-stage liver disease. Two large pediatric OLT series are analyzed to determine excess death rates (EDR) over 20 years. The EDR decreases over time and is lower with more recent transplant recipients who have benefited from improved tacrolimus-based immunosuppression and transplant techniques. Fifteen- to 20-year EDR is 5 deaths/1000. Biliary atresia is the most common pediatric indication, and these recipients do better than those with other types of liver disease. Most deaths occur in the first post-transplant year, with infection being the largest cause.

Influence of socioeconomic and ethical factors on people's behaviour regarding the use of cadaveric organs.

An organ donation is based on feelings of human solidarity and altruism. This approach, however, has not improved the organ shortage problem. The following suggestions might help to dismantle the persistent barrier linked to organ donation. (1) Society should be aware that during our lifetime we might be as much potential organ recipients as organ donors. (2) Educational campaigns should integrate the notion that cadaver organs are an irreplaceable source of health for every member of society. (3) Communication campaigns should illustrate that in allowing the use of our organs after death, we are, in fact, sharing a chance to prolong health for everybody, including perhaps ourselves. Furthermore, people need to acknowledge that using body parts is acceptable, and part of a tacit agreement between all members of society. Making a live organ donation to which the donor is emotionally related is a pressure-free decision. On the contrary, the donation of cadaver organs is influenced by negative factors. Conversely, self-interest and resistance to offering the body of a loved one to a stranger may make donation much more difficult if the current message is not modified. In an international survey of 242 transplantation professionals, with a 57% response rate, 70% to 83% agreed with this proposal. An international public survey has recently been finished, showing some results about the public's knowledge about religious opinions concerning transplantation, suggesting that religious institutions should assume a leadership role to give information about their positions. On the other hand, partial results concerning public attitudes regarding economic support to organ donation indicate that final data may be of interest. The creation of a Task Force with representatives from the World Health Organization, UNESCO, churches, and leaders of the global transplantation community may be key to joint efforts as a means to modify negative attitudes, to develop a new philosophy, and to deliver a new message to society.

Standards for economic and quality of life studies in transplantation.

There are unique requirements in conducting and reporting economic and quality of life investigations in medicine as compared with more traditional studies involving clinical outcomes. In addition, there are several unique characteristics of the discipline of transplantation that also bear attention in economic and quality of life studies. To provide guidelines for future research and reporting of future research, a consensus conference of transplant professionals was convened to discuss these issues. Five different areas were addressed: "Conducting an Economic Analysis," "Reporting an Economic Analysis," "Quality of Life Studies in Transplantation," "Ethical and Conflict of Interest Issues Between Sponsors and Investigators," and "Future Directions for Research." A series of recommendations for each of these areas with reference to relevant literature is presented.

Public and private insurer designation of transplantation programs.

In an effort to assure quality and contain costs, several major private health insurers now restrict payment of transplantation procedures to designated programs, often referred to as centers of excellence. These insurers underwrite coverage for over 100 million people. Few transplantation programs meet the criteria set forth by insurers, thus raising concerns about patient access to care. The criteria being used by five private insurers and Medicare were obtained and reviewed. Insurers now designate kidney, heart, liver, heart-lung, pancreas, and bone marrow transplant programs based upon total annual transplant volume as well as one- and two-year patient and graft survival rates. Transplant center criteria vary according to procedure and type of recipient (i.e., pediatric vs. adult). Most insurers require hospitals to perform a minimum of at least 6, and up to 50 procedures annually. Expected one-year patient survival rates may exceed 90% and are often higher than 80%, although standards are usually lower for heart-lung and bone marrow transplantation. In addition, if centers meet the minimum volume and outcome criteria, insurers expect transplant centers to discount per procedure changes by as much as 25%. Patients are often offered incentives to use designated centers with insurers frequently paying travel costs and reducing or waiving copayment amounts. The designation of transplant programs by third-party payers has merit, although program volume requirements may have less validity than individual transplant surgeon and physician experience. Other problems are also apparent. For example, discount pricing is suspect, given the lack of data on actual transplant procedure costs. Also, some insurers intend to regionalize transplant programs, thus unnecessarily limiting patient access to care. Alternatively, the concentration of transplant activity at a smaller number of centers may enhance research opportunities. Nonetheless, transplant professionals, hospital administrators, and patient advocates remain wary of insurer objectives. There is concern that the designation of centers is simply another method by which insurers can avoid paying for transplants.

Bone marrow transplantation. Problems and prospects.

Over the last 15 years, human bone marrow transplantation has evolved from experimental therapy of last resort for patients with end-stage leukemia and marrow aplasia. The increasing success and use of marrow transplants has stemmed from important advances made in (1) the understanding and definition of the major histocompatibility complex in man, (2) the development of safe yet efficacious immunosuppressive and myeloablative preconditioning regimens, and (3) the development of techniques of intensive supportive care for these patients during their intra- and post-transplant course.

Pew Memorial Trust policy synthesis: 5. State coverage for organ transplantation: a framework for decision making.

Transplantation of hearts and livers for both adults and children is increasingly viewed as therapeutic and lifesaving, but access to these procedures is impeded by their high cost as well as by a limited supply of organs. In the absence of comprehensive federal coverage, pressure is being brought to bear on states to provide broader access to these procedures. This synthesis provides a framework for the consideration of coverage decisions at the state level. While there are no "right" answers about whether a state should support such coverage, the analytic tools of cost analysis, demand estimation, and assessment of capacity described in this synthesis can better inform the decision-making process.