Characterizing the Experiences and Educational Needs of Patients and Caregivers During the Kidney Transplant Process

INTRODUCTION Bosnia and Herzegovina (B&H) belongs to the countries of the Western Balkan located in Southeast Europe with an area of 51 129 km2. The country is located in the continental part of Europe and extends to the Adriatic Sea. B&H is bordering Croatia in the north, west, and south; in the east, the country is bordered by Serbia, in the southeast by Montenegro, and in the southwest by the Adriatic Sea (Figure 1).1,2 According to the 2013 population census, B&H has 3 531 159 inhabitants, which is significantly less than in the 1991 census when the country counted 4 377 033.2 There are 2 219 220 people living in the Federation of B&H and 1 228 423 in the Republic of Srpska, and 83 880 people live in the Brčko District.1,2FIGURE 1.: Bosnia and Herzegovina, localized in the southeast of Europe.POLITICAL SYSTEM AND MEDICAL CARE IN B&H B&H is territorially divided into the Federation of B&H, the Republic of Srpska, and the Brčko District (Figure 2). The complex structure and organization of B&H is an essential problem in effectively establishing all aspects relevant for organ transplantation.3 There are defined competencies for health care and its organization that are performed at the level of entities and cantons. Unfortunately, there is currently no political consensus to structure transplantation or any other aspect of health care through a single platform for concerns that this approach may infringe on the authority of any of the political entities. In the Federation of B&H, there is 1 ministry of health that has a coordinating role and rarely decides exclusively on healthcare issues. In the Federation of B&H, there are 10 districts, each responsible for the organization of health care. The Republic of Srpska has a health insurance system linked to the Ministry of Health as the umbrella organization. The Brčko District has its own Health Office in charge of health care. In total, there are 13 ministries in B&H that independently organize health care for their territory (Figure 2).4FIGURE 2.: Organization of healthcare in the Federation of Bosnia and Herzegovina (left) and the Republic of Srpska (right).From 1974 to 1992, there was an Institute of Transplant Medicine of B&H in Sarajevo that performed the second highest volume of transplantations in The Socialist Federal Republic of Yugoslavia. There are now 3 transplant centers in B&H: 1 is in the Republic of Srpska, and 2 are in the Federation of B&H (Figure 3).FIGURE 3.: Scattered organization of dialysis and transplantation in Bosnia and Herzegovina.Since 1995, the Clinical Center at the University of Tuzla has contributed with >70% of all transplantations in B&H, including kidney, liver, cornea, and bone marrow transplantations. None of the centers in B&H currently provide transplant services for blood group incompatible donors and recipients, those with reoccurring kidney diseases, or highly sensitized patients. There are 27 dialysis centers in B&H; 11 of them are privately owned, with 16 in the public sector. Costs for dialysis are covered by health insurance (Figure 3). SOCIOECONOMIC STATUS The gross domestic product of B&H is one of the lowest in Europe and amounts to 6057 US dollars per capita; 3.2% of the gross domestic product is allocated to health care.5-7 Transplantation costs are covered by public healthcare plans of B&H, the Republic of Srpska, and the Brčko District. Notably, there is no out-of-pocket payment for patients. If there is a need to perform transplantations outside of B&H based on the assessment of evaluating institutions, transplant costs will be covered by those institutions. The budget for those situations is usually not entirely used with an annual surplus of approximately 700 000 US dollars. The average cost of a living-donor kidney transplantation is approximately 15 000 US dollars. LEGAL FRAMEWORKS B&H has a law regulating organ and tissue transplantation based on the legal framework that existed in the former state of Yugoslavia. In the Federation of B&H, laws on organ transplantation have been in place since 1997 with updates in 2004, 2009, and 2017, all aiming to improve the process.8 With the most recent modification (November 5, 2017), legal frameworks for living donation have been implemented. Deceased organ donation is based on an opt-in regulation with informed consent provided during lifetime confirmed by the next of kin. This approach limits organ availability in B&H. In contrast, as shown in other countries, implementing a presumed consent approach for B&H is expected to increase organ availability. PROMOTING TRANSPLANTATION The Donor Network of Bosnia and Herzegovina was established in 2001, with the aim to promote transplantation. Nevertheless, at this time, advancing transplantation in B&H is left to the enthusiasm of healthcare providers who are part of the Donor Network of Bosnia and Herzegovina, patients with kidney transplants, and some nongovernmental associations, promoting transplantation through forums, street activities, lectures, courses, distribution of promotional material, lectures to students, doctors, religious officials, and journalists. Unfortunately, there remains a lack of education on the need for organ donation. Consent rates remain disappointingly low with only 2 consents out of 10 brain-dead donors in 2019 and 2020. Table 1 summarizes donation and transplantation rates. As of March 31, 2021, 242 patients had been listed for kidney transplantations, 30 for liver, 20 for cornea, and 12 for heart transplantation. Currently, there is no transplant waiting list in the Republic of Srpska and Brčko District, and organs are allocated on a case-by-case basis. TABLE 1. - Donation and transplantation in B&H (2014–2020) Year 2014 2015 2016 2017 2018 2019 2020 Total Potential donors 26 20 25 24 46 16 10 167 Confirmed brain death 13 13 21 9 9 7 6 78 No. of conversations with family members 12 9 17 7 9 6 4 64 No. of families who did not agree to proceed with donation 8 3 12 4 2 2 2 33 No. of realized donors 4 6 5 3 3 1 1 23 Kidney transplants 7 10 10 4 4 2 2 39 Liver transplants 2 4 3 0 1 0 1 11 Cornea transplants 8 12 9 6 6 2 2 45 B&H, Bosnia and Herzegovina. Notably, there is no religious opposition to organ donation in the country except for the ethnic group of Romani people.6,7 KIDNEY TRANSPLANTATION As of December 31, 2020, the Renal Registry in B&H listed 2693 patients on dialysis; 1051 patients were registered in the Republic of Srpska, 1450 in the Federation of B&H, and 88 in the Brčko District. Causes of end-stage renal disease were mostly glomerulonephritis, diabetic nephropathy, and pyelonephritis; the prevalence of diabetic nephropathy is estimated at 154 per million inhabitants, representing the leading cause of end-stage renal disease in the recent past.9 Indeed, 14% of patients with diabetic nephropathy are on dialysis.10 The first kidney transplant in the country was performed in 1974 at the Institute for Organ Transplantation in Sarajevo. The institute existed until 1992 and performed 200 living-related kidney transplants and 1 kidney transplant from a brain-dead donor. Figure 4 shows the total number of kidney transplants in the country.FIGURE 4.: Renal transplants in Bosnia and Herzegovina.Transplantation teams have been trained since 1996 in Ljubljana (Slovenia), Vienna (Austria), and Lübeck (Germany). Transplant surgeons from Vienna supervised and participated in the entire organ transplant process at the University Clinical Center Tuzla. On September 15, 1999, the first kidney transplantation was performed in cooperation with transplant surgeons from the Vienna General Hospital.11-13 Transplant physicians and surgeons from Merkur Clinical Hospital (Zagreb, Croatia) supported the first kidney, liver, and cornea transplants that have been performed on June 22, 2006, from a deceased donor.12,13 From 1974 until August 2021, 523 kidney transplants have been completed in B&H (Figure 4). Despite the coronavirus disease 2019 pandemic, a living unrelated kidney transplant has been performed at the University Clinical Center Tuzla in July 2021. Figure 5 shows the total number of kidney transplants performed since 1997. Graft survival has been 94%, 82%, and 60% by 1, 5, and 10 y, respectively. The presented survival rates do not deviate from the results of reference centers.14FIGURE 5.: Total number of deceased and living-donor kidney transplants.LIVER TRANSPLANTATION The first liver transplantation in B&H was performed in 2006 from a brain-dead donor. Until January 2021, a total of 20 liver transplants, including 3 retransplantations, have been accomplished at the University Clinical Center Tuzla. The majority of liver transplant recipients (65%) have been in recipients aged <50 y, with 78% of recipients aged <60 y. The most common underlying liver disease was cirrhosis caused by hepatitis B infection in 30%, hepatitis C in 25%, and sclerosing cholangitis in 25% patients. The average survival of patients is 9.8 y. Survival of patients on the waiting list after 1 y is 40% compared with 75% for transplanted patients. Notably, none of the patients waitlisted for a liver transplant have been alive after a period of 2.8 y, whereas 75% of transplanted patients survived beyond 5 y. The small volume of liver transplants is a big problem for the treatment of patients with terminal liver failure. Nevertheless, survival of liver graft recipients in B&H does not differ from the results in other countries despite the lack of a unified transplant program at the state level.15 BONE MARROW TRANSPLANTATION Bone marrow transplantation started at the University Clinical Center Tuzla in 2004, and 150 transplantations have been performed until August 31, 2021 (23 allogeneic, 127 autologous bone marrow transplant). There has been additional bone marrow transplant activity at the Clinical Center University of Sarajevo since 2004, focusing on autologous procedures, of which 170 have been performed. Indications included acute leukemias, lymphomas, and multiple myeloma. CORNEA TRANSPLANTATION Cornea transplants started in 2007, and 66 have been performed. Graft survival after 1, 5, and 10 y has been 100%, 75%, and 50%, respectively (Figure 6).FIGURE 6.: Total number of transplants in Federation of B&H (from 1997 to August 2021). B&H, Bosnia and Herzegovina.CONCLUSION Although small in size, B&H has had an active history of kidney, liver, cornea, heart, and bone marrow transplantations. B&H has enthusiastic and experienced transplant providers; however, the availability of organs from deceased donors remains scarce. Infrastructure is not on satisfactory level, with shortcomings in the organization of transplantation. A comprehensive transplant program and strategy is needed throughout B&H. The biggest problem is the complex political organization along with an absent single commission for transplantation. Providers would very much want to organize the transplantation process based on the "the Spanish model." A system of educating the population promoting transplantation through the establishment of the Donor Network of B&H as a direct communication and cooperation with the Spanish Institute for Donation in Barcelona has been established. ACKNOWLEDGMENTS The authors are grateful to colleagues from Austria and Croatia (particularly Prof Dr Ferdinand Mühlbacher, Prof Dr Rudolf Steininger, and Prof Dr Branislav Kocman) who supported transplantation in a most enthusiastic and selfless fashion. By promoting transplantation, the authors help patients and encourage the development of the medical profession and science as a permanent need for education and progress.

Simultaneous en-bloc pancreas and kidney transplantation from a small pediatric donor after circulatory death.

ObjectiveNative Americans suffer from lower rates of kidney transplantation compared with whites. Our goal was to elicit patients’ perceptions of and attitudes about kidney transplant and the impact of financial...

The role of social networks: A novel hypothesis to explain the phenomenon of racial disparity in kidney transplantation

In April 2003 the Alberta government integrated specialized mental health services, formerly organized independently, with the health regions, which are responsible for general health services. The objective of this article is to determine whether the transfer was associated with an increase or decrease in the share of resources in the region allocated to mental health care relative to total spending for health care. The measure of the share for mental health care is the total costs for mental health care resources as a percentage of total health care spending. Resources and spending examined were those that were actually or potentially under the regions' control. Annual costs for mental health services in the province were obtained for a seven-year period (fiscal year [FY] 2000 through FY 2006) from provincial utilization records for all residents in the province. Unit costs were assigned to each visit. The trend in the share measure was plotted for each year. The share for mental health care increased overall from FY 2000 (7.6%) to FY 2003 (8.2%), but returned to pre-FY 2003 levels in the three years after the transfer (7.6%). Despite concerns expressed before the transfer by federal and provincial reports over the level of expenditures devoted to mental health care, the integration of mental health services with other health services did not result in an increase of the share for mental health care.

The number of patients with end-stage renal disease in Ukraine, as in the whole world, increases. Kidney transplantation remains the most effective method of treatment for such patients. After 1933, when in Ukraine the world’s first kidney transplantation was performed, the number of there surgeries remained insignificant (up to 130 operations per year). In 2018–2020, the reform of transplantation in Ukraine began due to the change of some laws. And as a result, the number of such operations is gro­wing every year. Control over the transplantation process is carried out by a newly created body of the Ministry of Health of Ukraine, the Ukrainian Transplant Coordination Center. New transplant centers are being created, immunological support of transplant couples is being improved using polymerase chain reaction, flow cytometers and solid-phase methods due to HLA typing of the donor and recipient according to A, B, C, DR, DQ, DP loci, detection of anti-HLA antibodies, allele-specific anti-HLA antibodies using single antigen bead assay. Examinations of patients are carried out at the pre-transplantation stage and as part of monitoring after transplantation. Given the military actions, the lack of aviation and the long time of getting to the clinic, it became possible to preserve organs by methods of hypothermic or nomothermic perfusion. The number of organ transplantations is increasing. In 2023, several successful simultaneous heart and kidney, kidney and pancreas transplantations were performed. The problems of overcoming tissue incompatibility, choosing the optimal immunosuppressive therapy regimen for a given patient, training of nephrologists, wider and more effective use of perfusion machines, new protocols of immunosuppressive therapy, studying the peculiarities of kidney transplantation from marginal donors (the number of which in Ukraine prevails), kidney transplantation in highly sensitized recipients are still actual in Ukraine. The cooperation with our European and American colleagues is very important to improve the long-term results of such operations.

Measuring Patient Knowledge of Kidney Transplantation: An Initial Step to Close the Knowledge Gap.

Organ Transplantation in Argentina.

Accuracy of Kidney Failure Risk Equation in Transplant Recipients

The Strength of Generations

Background:Our institution is the largest pediatric kidney transplantation (KT) center in Canada and the referral center for pediatric KT in Ontario. Pediatric KT recipients are referred to our center for KT and transferred back to their local tertiary care institutions for post-transplant care. This investigation assesses whether the current system of transferring patients back to their local tertiary care institutions following KT allows decreased burden and distribution of resources from a single centralized surgical center.Methods:A retrospective review of KT performed at our institution between 2000 and 2015 was performed. Patients were divided into those who began their chronic kidney disease (CKD) care at our institution and those who began their care elsewhere. Readmission to our institution within 1 year of KT for surgical and nonsurgical complications was compared. The geographical proximity of patients to our institution and institution of initial CKD care was assessed quantitatively and mapped visually.Results:Of 324 patients who underwent KT, 244 (75.3%) began their CKD care at our institution. Those who began their CKD care at other institutions had shorter initial admissions to our institution (17 [14-24] vs 14 [12-17], P < .0001) and were less likely to be readmitted to our institution for nonsurgical concerns at <6 months after transplant (P < .0001) and 6 to 12 months after transplant (P < .0001). There were similar readmissions for complications requiring surgical management. The relationship between the center of CKD initiation and readmission remained significant on multivariate analysis. There was a significant difference in distance (km) to our institution between the 2 groups (46 [interquartile range = 24-109] vs 203 [117-406], P < .0001).Conclusion:Patients who are geographically distanced from our institution began their CKD care at their closest institution and were managed effectively at those institutions following initial discharge/transfer of care, suggesting that there is an effective distribution of health care resources with regard to CKD and KT care.

Much of the literature on kidney transplant education focuses on educating recipients prior to transplant or in the early postoperative period. It is unknown whether the information provided is meaningful to patients or whether the importance of education topics changes with time. We sought to identify the learning needs of patients post-kidney transplant. Our multidisciplinary team conducted a mixed-method study to better understand the learning needs of patients; what is important to them in the early postoperative period and a year after transplant. One urban academic hospital performing kidney transplant in Ontario, Canada. Data were collected between September 2019 and March 2021, including during the COVID-19 pandemic. A convenience sample of 20 participants in the post-kidney transplant clinic. Participants' mean age was 56 (SD ± 11) with 75% of participants male gender. Twenty kidney transplant patients were recruited between 3 and 6 months post-transplant. Participants completed an initial demographic questionnaire. They completed the Learning Needs Inventory (LNI) and a one-on-one semi-structured interview at 2 time points: 3 to 6 months post-transplant and 12 to 18 months post-transplant. Patient interviews revealed that their access to a trustworthy health care team, support system, and reported challenges post-transplant shaped their ability to engage in learning. Patients shared that each aspect influences when and what topics were important to them, which allowed patients to obtain personalized education. A multidisciplinary team extending beyond physicians and nurses to include professionals such as pharmacists, dietitians, and social workers can best address patient-specific education needs post-transplant was highlighted in patients' comments. Patients revealed that their support system helps to develop self-reliance and support their transition after transplant to allow them to recover and manage challenges after transplant. Support systems varied from family, friends, colleagues and included social media and community organizations were helpful. Our study identified 3 realms of challenges post-transplant including: emotional, physical, and financial. Quantitative data showed significant findings on the level of importance regarding the use of alcohol, demonstrating a shift in median rating of "not important at all" to "not very important" (P = .016). A significant effect (P = .031) shifting the median rating of post-transplant dental care from of "a little important" to "very important." The small convenience sample with only English-speaking patients used in this study may have affected our ability for generalizable results. Part of this study was completed during the COVID-19 pandemic, which may have led to individual responses to vary, as priorities may have been different during the pandemic. Only 2 topics (dental care and use of alcohol) shifted in importance. Most education topics (ie, rejection, infection) covered in 3 to 6 months post-transplant continued to be important for those that have had their transplant for more than a year suggesting the need for ongoing education post-transplant. Multidisciplinary care teams play an important role in providing personalized education to patients and help to address emotional, physical, and financial challenges after transplant. This study showed the importance of social media and community organizations in patients' education offering an additional avenue of support and to hear others, lived experiences. Not registered.

BackgroundThis study was an ex-ante cost-utility analysis of deemed consent legislation for deceased organ donation in Nova Scotia, a province in Canada. The legislation became effective in January 2021. The study's objective was to assess the conditions necessary for the legislation change’s cost-effectiveness compared to expressed consent, focusing on kidney transplantation (KT).MethodWe performed a cost-utility analysis using a Markov model with a lifetime horizon. The study was from a Canadian payer perspective. The target population was patients with end-stage kidney disease (ESKD) in Atlantic Canada waitlisted for KT. The intervention was the deemed consent and accompanying health system transformations. Expressed consent (before the change) was the comparator. We simulated the minimum required increase in deceased donor KT per year for the cost-effectiveness of the deemed consent. We also evaluated how changes in dialysis and maintenance immunosuppressant drug costs and living donor KT per year impacted cost-effectiveness in sensitivity analyses.ResultsThe expected lifetime cost of an ESKD patient ranged from $177,663 to $553,897. In the deemed consent environment, the expected lifetime cost per patient depended on the percentage increases in the proportion of ESKD patients on the waitlist getting a KT in a year. The incremental cost-utility ratio (ICUR) increased with deceased donor KT per year. Cost-effectiveness of deemed consent compared to expressed consent required a minimum of a 1% increase in deceased donor KT per year. A 1% increase was associated with an ICUR of $32,629 per QALY (95% CI: − $64,279, $232,488) with a 81% probability of being cost-effective if the willingness-to-pay (WTP) was $61,466. Increases in dialysis and post-KT maintenance immunosuppressant drug costs above a threshold impacted value for money. The threshold for immunosuppressant drug costs also depended on the percent increases in deceased donor KT probability and the WTP threshold.ConclusionsThe deemed consent legislation in NS for deceased organ donation and the accompanying health system transformations are cost-effective to the extent that they are anticipated to contribute to more deceased donor KTs than before, and even a small increase in the proportion of waitlist patients receiving a deceased donor KT than before the change represents value for money.

Dialysis social workers (DSWs) educate and advocate for end-stage kidney disease (ESKD) patients during the kidney transplantation (KT) process. However, little is known about the barriers DSWs face as they help patients get waitlisted and how to best support their efforts. We interviewed DSWs across New York (NY) State to examine their experiences, supports, and challenges in helping dialysis patients progress through KT education, referral, and evaluation. We conducted semi-structured interviews with DSWs in NY State who had participated or expressed interest in a program designed to educate DSWs about KT and used rapid qualitative analysis to identify themes. We interviewed 17 DSWs. Seven themes emerged: (1) DSWs report involvement in KT interest assessment, education, referral, and evaluation support, (2) DSWs report varying nephrologist support in helping patients progress to KT, (3) DSWs perceive social support and adherence as key factors in KT centers' eligibility determinations, (4) DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations, (5) Patients express KT concerns and DSWs counsel them about these concerns, (6) DSWs report solutions to help patients complete KT evaluation appointments, and (7) DSWs report communication deficiencies between dialysis centers and transplant centers, and patients. Education for DSWs, support from nephrologists, and resources to help patients complete KT evaluation steps facilitated DSW engagement throughout the pre-transplant process, underscoring the need for multi-level, cross-disciplinary programs to support these efforts.

Background: Gender disparities are a major ethical concern in renal donation and transplantation. Relatively few Indian studies, each limited by small sample sizes, have investigated the problem of gender disparities in renal transplantation. Methods: A retrospective, cross-sectional study was conducted using data collected from kidney transplantation centers in Kerala, a southern state of India, to analyze the gender disparity in kidney donation and transplantation. Data were collected on gender, age, and relationship of the donor to the recipient. Results: Among 592 related cases, 74.2% of donors were female and 25.8% male (p <.0001). In the case of recipients, 76.2% were male and 23.8% female (p <.0001). Among 110 unrelated donors, 30.9% were female and 69.1% male (p <.0001), while the recipients were 78.2% male and 21.8% female (p <.0001). The number of cadaver kidney transplantations (six) was too small for analysis. Conclusion: The study found that the majority of living-related donors are family members (first-degree relatives) of the affected patients, with a definite female gender disparity among donors and recipients, more pronounced than reported in other studies. This disparity was absent in the case of living-unrelated donors, however. Existing practices in the organ transplantation process should be reviewed in order to eliminate the donor gender disparity in India. Kidney transplantation registries and organ matching systems at the national, state, and district levels are necessary for accountability and regulation of the transplantation process in India.