Introduction
Kidney transplantation (KT) is the ideal treatment option for patients receiving kidney replacement therapy. Living-donor KT is generally favored over deceased-donor KT because of greater graft and patient survival, although donor deficit is the main barrier. The prevalence of live-donor KT varies according to society because the decision to donate is affected by cultural background and social agreement. South Korea is a prominent nation that relies heavily on living rather than deceased donors. The incidence of living-donor KTs reached 48.02 cases per million in 2022, securing the second position among 85 countries worldwide [1]. Among Asian countries with similar cultural backgrounds, Japan is comparable to Korea, whereas Taiwan performs more deceased-donor KT than living-donor KT. In the United States, deceased-donor KT is significantly more prevalent, with rates of 61.10 per million population (PMP) compared with 17.5 PMP for living donors in 2022, although recent efforts to advocate live donor protection may increase live-donor KT. Black and Hispanic children and adults are less likely to undergo both deceased-donor or living-donor KT [2,3].
Most live kidney donors are known to be safe after donation; however, several concerns about adverse long-term medical outcomes have been raised in long-term observational studies, such as a decline in kidney function to chronic kidney failure [4], all-cause mortality [5-7], post-donation hypertension, and pregnancy-induced hypertension/preeclampsia [8-10]. These studies showed controversial results, but their absolute risks are too small to suppress live kidney donation [8,11]. In addition, nonmedical factors, including financial, psychological, and social problems, may occur after voluntary donations [12]. These findings indicate the importance of nonmedical factors in ensuring the safety and wellbeing of living kidney donors. Moreover, live kidney donors experience unexpected pain and a temporary decrease in quality of life (QOL) during the process of undergoing unnecessary surgery in a healthy status, followed by gradual recovery in the long term [13]. However, these factors after donation are frequently underestimated in the real world. In addition, there is a lack of objective data and research on support measures for pain and QOL deterioration after donation, especially in South Korea.
The decision to donate is influenced by various factors, such as religious beliefs, cultural aspects, family relationships, and knowledge related to donation. Notably, the perceptions of organ donation differ between Koreans and Korean Americans, with Korean Americans viewing organ protection as a personal right. Research indicates that Asian Americans prioritize the family’s common good in donation decisions [14], and within Confucian cultures, there is often a shortage of organ donations from deceased donors owing to the emphasis on body integrity [15,16]. In Korea, family-oriented values lead to viewing organ donation as beneficial for the common good, sometimes undervaluing donor gratitude. Ensuring the wellbeing of living kidney donors is crucial; however, their experiences have been underreported. Sharing donors’ experiences is important for supporting donors’ medical, psychological, and socioeconomic stability. In Korean society, living-donor KT is considered natural, leading to a lack of social discussion about donors’ experiences and perceptions. To address this, we aimed to gather objective data on the psychological, social, and mental health status of living kidney donors who had undergone donor nephrectomy through a questionnaire, with the goal of enhancing the quality of living transplant recipients.
Methods
Ethics statements
This study was approved by the Institutional Review Board of Seoul National University Hospital (No. H-1903-116-1019) and Keimyung University Dongsan Hospital (No. DSMC IRB 2020-04-003). This study adhered to the guidelines outlined in the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist and was conducted in accordance with the principles of the Declaration of Helsinki. Prior to responding to the questionnaire, participants provided written informed consent.
Questionnaire design and measures
Detailed survey items are presented in Table 1, and the corresponding questionnaire is provided in Supplementary Materials 1 and 2 (available online). The questionnaire included basic demographic information, employment status, socioeconomic status, motives for donation, concerns during the donation process, medical/socioeconomic evaluations, pain, opinions on donation, and medical and related expenses incurred during donation. Socioeconomic status and economic activity were assessed using information from the Korean National Health and Nutrition Examination Survey. QOL was measured using the 36-Item Short Form Health Survey (SF-36), a standardized questionnaire used to assess QOL. It consists of 36 items covering various aspects of physical functioning, limitations due to physical health, bodily pain, general health perceptions, vitality, and social functioning. However, limitations due to emotional and mental health and its reliability and validity have been confirmed [17,18]. Depression screening was conducted using the Korean version of the nine-item Patient Health Questionnaire (PHQ-9). The pain scores reported by the donors were assessed using the visual analog scale immediately after donation, at the time of discharge after donor nephrectomy, at the first outpatient visit after donor nephrectomy, and the current pain score experienced in daily life. Four medical professionals involved in KT and donor follow-up jointly created survey items by discussing their opinions on the pre- and post-donation conditions. These items were included in the questionnaire.
Recruitment
This study was conducted on live kidney donors who had undergone or were planning to donate a kidney to children or adults at Seoul National University Hospital and Keimyung University Dongsan Hospital between June 2020 and November 2020. Most donors were chosen based on standard guidelines. Before donation, all potential donors underwent a thorough health evaluation, encompassing assessments of kidney function, proteinuria/albuminuria levels, body measurements, biochemical tests, esophagogastroduodenoscopy, screening for active or chronic viral infections, and examination of kidney vascular structures. Psychological and social counseling was conducted for potential donors. Following completion of these evaluations, potential donors had a final outpatient visit to the nephrology and urology clinics before donor nephrectomy. During this visit, the donors were informed about the study, and a questionnaire was administered to potential donors who consented to participate. Those who refused to participate in the study or who were deemed by the researchers to face difficulties in participating were excluded. In the pre-donation survey, participants were asked to select up to three reasons for their decision to donate, ranked from first to third. However, the structure of the question allowed participants to select multiple reasons within the same rank. As a result, the total number of responses for each rank may exceed the number of participants. Individuals who took part in the research were extended an invitation to engage in the survey once more, this time at the 3-month mark after their donation. Donors who had already undergone kidney donation were encouraged to participate in the survey during their follow-up outpatient visits. Guidelines were provided to the inquirers to ensure their understanding of the survey content and methods. Individual training was also provided to enhance the inquirers’ proficiency in completing the questionnaire.
Statistical analysis
Categorical variables were compared between groups using the chi-square test. A frequency analysis was performed for each questionnaire, and McNemar test and paired t-test were used to assess the differences in responses before and after donor nephrectomy. All analyses were performed using IBM SPSS version 23.0 (IBM Corp.). Statistical significance was set at a p-value of <0.05.
Results
Baseline characteristics of the respondents
The baseline characteristics of the study participants are presented in Table 2. A total of 300 donors completed the survey, including 27 at pre-donation, 68 at both pre- and post-donation, and 205 at post-donation. Reasons for conducting the survey before donation but not after could be as follows: 1) the recipient was found to have abnormalities during pretransplant evaluation; 2) challenges in proceeding with transplantation due to failed desensitization in human leukocyte antigen-incompatible KTs; 3) the recipient still retained sufficient kidney function, thus deferring the urgent need for transplantation; and 4) donors’ refusal to participate in the post-donation survey. Overall, there were more women donors, and 19.7% were older than 60 years. Relationships of the recipient were observed as spouses, parent-child, and siblings. Approximately 87.0% of the participants were married, and more than half of the donors reported having a religious affiliation.
Questionnaire for prospective donors: reasons for deciding to donate and the concerning factors after donation
A survey was conducted with 95 prospective donors to investigate the reasons for their decision to donate, ranked from first to third (Table 3). For the good health and wellbeing of the recipients, the highest proportion was 59.1%. The secondary priority, “For the benefit of the overall family that includes the recipient and donor themselves” had a proportion of 52.3%. The third property, “Fulfillment in saving a person’s precious life” and “Having confidence that no significant physical issues will arise after donation” accounted for 34.9%. Prospective donors prioritized altruistic reasons, including the good health and wellbeing of the recipients and their family group, when making the decision to donate. The proportion of those who selected secondary benefits as the reason for donation was below 5% in all priority rankings.
Concerns about kidney donation were also surveyed (Table 3). Considering that the total proportion of reasons related to physical issues in all priority rankings is close to 60%, it can be inferred that donors’ physical problems are the most worrying. Economic issues resulting from donations showed a slightly lower proportion of priority; however, these problems were identified as concerns, followed by physical issues, in the second and third priority rankings. Interestingly, 18.3% of the prospective donors selected “Potential inability of the recipient to maintain the donated kidney.”
Comparison of health status and quality of life before and after donation
A total of 205 donors who completed only the post-donation survey and 68 donors who completed the survey before and 3 months after donation were surveyed to investigate changes in subjective health scores, QOL, and mental health before and after donation (Fig. 1). The pre-donation survey was conducted for a median of 27.5 days (interquartile range [IQR], 2–71 days) before the surgery. Donors who completed the post-donation survey were surveyed at a median of 541.5 days (IQR, 123–712 days) following nephrectomy for donation. Considering the pre-donation health score as 100 and assessing the subjective health score at the time of the survey after donation, the score significantly decreased, with an average score of 86.3 ± 20.7 (p < 0.001) compared with that before donation. Changes in QOL and depression scores were examined using items, such as the SF-36 and PHQ-9. The results showed that all measures of physical functioning, vitality, and mental health/general health significantly decreased after donation, and scores related to physical, emotional, and social roles; functional limitations; bodily pain intensity; and depression significantly increased after donation.
Postoperative complications experienced after donor nephrectomy
The symptoms and complications experienced after donation were investigated among 273 donors who participated in the post-donation survey, allowing for multiple responses (Fig. 2). Of the participants, 64.1% reported experiencing symptoms and complications after donation, with “pain associated with surgery” being the most common at 38.0%. The proportion of individuals reporting surgery-related pain after donation did not differ between the group that participated in surveys before donation and 3 months after donation and the group that only participated in surveys after donation (p = 0.92). Among the participants, 56.9% experienced one or two complications simultaneously, whereas 7.3% experienced three or more complications. In addition, donors reported their pain scores. Immediately after the donation surgery, the average pain score was 7.4 ± 2.8, indicating that most of the donors experienced pain. However, over time, the pain scores significantly decreased (at the time of discharge after nephrectomy, 5.2 ± 2.6; at the first outpatient visit after nephrectomy, 3.2 ± 2.5; current pain score experienced in daily life, 0.9 ± 1.5). Among the donors, 37 (15.4%) sought medical care from primary and secondary healthcare facilities because of pain after donation.
Economic and social changes after kidney donation
A total of 273 donors responded to a questionnaire on economic and social changes and costs. Among respondents, 34.2% reported experiencing economic and social changes. A significant difference was observed between the group that participated in both pre- and post-donation surveys and the group that underwent only post-donation surveys while being followed up in the outpatient clinic (pre-/post-donation 23.5% vs. only post-donation 39.5%, p = 0.03). The group surveyed both before and after donation mainly responded approximately 3 months post-surgery, whereas those surveyed only after donation had a longer follow-up (median, 377 days; IQR, 149–797 days), potentially explaining the differences observed.
Among those who reported experiencing economic/social changes, 64.5% mentioned facing difficulties due to surgical costs incurred during donation, 54.9% had various insurance restrictions after surgery, and 42.7% reported career interruptions due to taking a leave of absence or temporary resignation (Fig. 3). Out of the kidney donors, 180 (75.6%) had a job at the time of the nephrectomy. The number of days they could not work due to outpatient visits or hospitalization before and after donation was 67.3 ± 85.1 days, and the number of unpaid leave days was 34.6 ± 53.3 days. Among the donors who did not have a job, the number of days they could not engage in childcare or household chores was 41.1 ± 38.1 days.
In the survey regarding the costs associated with donation and hospitalization due to donor nephrectomy both before and after donation, 85.4% of the donors responded that they had received prior notification about the estimated costs of donation. Among these costs, 40.8% of the respondents reported that the donors themselves bore the full cost, whereas 35.4% indicated that the recipient bore the full cost. Only 24.2% of the expenses incurred during the donation process were covered by personal health insurance, indicating that coverage provided by health insurance for donation-related expenses was insignificant.
Discussion
The Amsterdam Forum [19], Vancouver Forum [20], and KDIGO (Kidney Disease: Improving Global Outcomes) guidelines [21] emphasize the importance of assisting, supervising, and monitoring donors during postoperative recovery and long-term follow-ups. The 2008 Declaration of Istanbul [22] also stresses the importance of both medical and psychosocial management of donors. Building on these principles, standardized criteria for living donor management are in place in the United States, requiring multidisciplinary team care and social and nutritional services as specified in the Code of Federal Regulations [23]. The Organ Procurement and Transplantation Network requires a minimum 2-year follow-up period and submission of a living donor follow-up form containing donor health status, work income, insurance losses due to donation, medical complications, and mortality information [24]. Additionally, the Council of Europe adopted a resolution on organ donation and transplantation in 2008, leading to the formulation of protocols and registries for living donor follow-ups in various countries to standardize practices and facilitate international data sharing [25]. In fact, several countries, including Switzerland [26], Australia, and New Zealand [27], have established living donor registries. In Korea, the Korean Organ Transplantation Registry (KOTRY) maintains data on living kidney donors, although it primarily focuses on recipients. While there is some data on donors, it is not comprehensive, and the follow-up data on donors is less extensive than that for recipients [28]. Despite living kidney donations being predominant in South Korea, there is still no registry or standardized monitoring program for donors.
Moreover, in the Korean context, where familial common good, family-centered culture, and mutual obligation are emphasized [11], the aspect of donor advocacy has been overlooked. Thus, there remains a paucity of policies and regulations concerning live-donor advocacy. As the focus on ensuring the safety, wellbeing, and independent and autonomous decision-making of altruistic donors grows, proactive discussions on these aspects are necessary. A survey was conducted based on this background information.
Owing to the rapidly increasing incidence of chronic kidney disease, the number of patients receiving kidney replacement therapy is gradually rising, and the best option for renal replacement therapy is KT [29]. It is well-known that choosing transplantation over long-term dialysis ensures better QOL and clinical outcomes for recipients while also reducing medical costs [30]. However, in Korea, due to various cultural reasons and the adoption of an opt-in system [31], the number of deceased-donor KTs is only 747 cases, and the average waiting time is reported to be approximately 1,955 days in 2021 [32]. By contrast, living-donor KT is very active in Korea, largely driven by the dedication and devotion of donors, with approximately 98% of cases involving family members [7]. In fact, the kidney donors who participated in this study prioritized the health of the recipients and the happiness of their families when deciding to donate (Table 3) based on the perception that kidney donation would not significantly impact their own health.
Accurate information regarding the potential complications and changes that may arise after donation should be provided to kidney donors. Although medical issues, including renal function deterioration and mortality, have been investigated, less emphasis has been placed on the subjective symptoms and social/economic changes experienced by donors. In a previous survey conducted among a general population of 1,000 individuals in Korea [16], when respondents who reported no willingness to donate were asked about their reasons (allowing for multiple responses), concerns related to health were identified as the main reason for reluctance (‘fear of various physical complications that may arise after donation’, 69.1%; ‘fear of potential impact on the kidney and other organs upon long-term follow-up’, 67.7%). Interestingly, fear of the potential impact on economic activities after donation was expressed by a substantial proportion, accounting for 33.8%. In this study, although the percentage was lower than that in the general population, donors expressed concerns about economic and social issues following donation, ranking second after physical problems.
As aforementioned, the reasons for hesitation regarding donations in the general population are primarily related to physical complications. Similarly, 64.1% of donors experienced physical complications after kidney donation. Furthermore, at the 3-month postoperative mark, donors reported a decrease in QOL across all categories and an increase in depressive symptoms compared with those during their pre-donation state (Fig. 2). While pain resulting from surgery tends to recover over time, it is necessary to inform donors in advance about the various medical problems that may arise because of donation. Furthermore, additional consideration should be given to the potential societal and economic impacts caused by various physical complications, decreased QOL, feelings of depression, and slow recovery from medical issues after donation, which may act as obstacles to returning to previous occupations or seeking new employment opportunities [33].
While many aspects of the results align with previous studies on living kidney donors, this study offers new insights particularly relevant to the Korean context. It is important to note that donor reimbursement systems vary significantly across different countries. In the case of the United States, nearly 25% of kidney donors report experiencing financial difficulties as a result of the donation, even though all medical expenses related to the donor’s evaluation, surgery, and postoperative care are paid for by insurance [34]. Furthermore, European countries including the United Kingdom, Belgium, and France try to compensate nonmedical cost for donors including travel, accommodation, and lost income during recovery [35-37]. These differences in compensation policy for live kidney donors may affect the perceived burden of donors. Surprisingly though, there was no data about donor-perceived financial burden except in the United States [38]. Therefore, this study may give valuable insight into the financial strain experienced by donors under the Korean national insurance system and conventional Confucian culture. Simultaneously, our findings suggest the need for policy adjustments parallel with other countries and cultural changes, particularly in direct medical cost, to support donors better.
We previously found that kidney donors in Korea exhibited significantly lower employment rates immediately after donation than those of a matched control group [12]. In Korea, workers can receive paid leave for up to 30 days for the necessary medical examinations and hospitalizations required for organ donation. However, the actual period during which donors were unable to work after the donation was approximately 67 days, and the unpaid leave they took amounted to approximately 35 days. This indicates that organ donors may experience economic disadvantages due to their donations. Based on this background, we previously investigated the need for economic and social support for living organ donors in the general population [16]. The majority of the general population (81.3% of 1,000 participants) was in favor of the government providing social and economic support to living kidney donors after reading the detailed description of kidney donation. These findings indicate the potential need for economic support and removal of socioeconomic disincentives related to kidney donation [39]. Any decisions regarding such support should be made after thorough social deliberations have taken place. Lastly, the issue of insurance-related restrictions after donation emerged as a key finding. Among the donors who reported experiencing economic changes post-donation, more than half of the donors reported difficulty obtaining or maintaining insurance post-donation, an area that has received relatively little attention in previous research. This highlights the need for systemic reforms to ensure that kidney donors do not face long-term penalties or barriers to essential services due to their altruistic actions.
This study had several limitations. First, the questionnaire items used in this study were not specifically validated or standardized, leaving the possibility that researcher biases may have unconsciously influenced the results. Additionally, because the results were based on subjective responses from kidney donors, caution should be exercised when interpreting the findings, considering various factors. Second, the analysis of pre- and post-donation outcomes was conducted with a gap of approximately 3 months, which may not provide sufficient insight into the long-term changes following donation. Third, because this study was conducted in only two tertiary hospitals in Korea, caution should be exercised when interpreting the results for donors from other countries, as support policies and insurance coverage for kidney donors may vary across nations. Another limitation of this study is the sample’s representativeness. Although the study analyzed 300 responses from living kidney donors, including both pre- and post-donation surveys, the findings may not fully reflect the broader population in South Korea. Therefore, while the insights into socioeconomic and psychological impacts are valuable, they should be interpreted with cautions. Lastly, one potential limitation of our study is the use of registered numbers for survey participants. While this was necessary to perform accurate pre- and post-donation comparisons through paired t-tests, it could have introduced response bias. Participants might have felt that their identities could be traced, potentially influencing their responses to sensitive questions. To minimize this, we ensured strict confidentiality and anonymity in the analysis.
This study aimed to investigate the perceptions, basic attitudes, QOL, economic and social changes, and costs associated with living kidney donations among individuals who were preparing for or had undergone the donation procedure. Based on this study, evidence and guidelines for policy support for live kidney donors can be provided. Furthermore, this study serves as a basis for discussions among professional societies, transplant recipients and donors, ethics experts, and policymakers to establish appropriate management strategies for living kidney donors.
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