Key words : Chronic kidney disease, End-stage renal disease, Renal transplant

Introduction
The definitions and classifications of chronic kidney disease (CKD) have evolved over time. Current international guidelines define CKD as a glomerular filtration rate (GFR) of less than 60 mL/min/1.73 m2 or damage to the kidneys for at least 3 months, regardless of cause. In the United States, 4 of every 1000 people have CKD, with over 300?000 relying on dialysis. Chronic kidney disease imposes a substantial financial burden on health care systems globally, and the incidence and prevalence of CKD are carefully tracked in many countries, such as India. Chronic kidney disease is a major public health challenge, contributing to high morbidity, mortality, and health care costs.

End-stage renal disease (ESRD) is the irreversible loss of kidney function, leading to symptoms such as fatigue, swelling, difficulty concentrating, decreased appetite, and changes in urine output, along with complications like high blood pressure, anemia, and bone disorders. Dialysis is a common treatment for ESRD, whereas kidney transplant is often recommended for long-term management.

Chronic dialysis often leads to complications such as cardiovascular disease, peripheral neuropathy, parathyroid adenoma, and acquired cystic kidney disease. Kidney transplant generally offers better survival rates and quality of life compared with dialysis. However, less than 40% of ESRD patients are willing and eligible for transplant because of concerns about the lengthy process, financial issues, fear of rejection, physical complications, and adjustment to dialysis routines.

Kidney transplantation presents challenges like donor scarcity, medical eligibility, financial constraints, psychosocial factors, surgical risks, and ethical considerations. Barriers such as financial constraints, lack of health insurance, limited access to transplant centers, and transportation issues particularly affect marginalized communities, leading to disparities in access to transplant. Understanding and addressing these barriers are crucial for equitable access to transplant.

The decision to undergo kidney transplant is personal, reflecting individual values and preferences. Some patients prioritize autonomy and may choose to continue dialysis, whereas others have concerns about the effects of transplant on their lifestyle, career, or relationships. Respecting patient autonomy and engaging in shared decision-making are essential for patient-centered care, allowing patients to make informed choices aligned with their values and goals. Our study aimed to identify the most common factors that affect kidney transplant decisions; addressing these concerns could increase the rate of kidney transplant and improve survivability and quality of life for patients with ESRD.

Materials and Methods
Our study was a cross-sectional analysis conducted in 2024 that included patients on chronic hemodialysis at hemodialysis centers affiliated with the University of Medical Sciences of Shiraz, Iran. We conducted a comprehensive census to examine all patients in Shiraz. According to available statistics, Shiraz has 13 hemodialysis centers. However, 1 center chose not to fully participate in the study. As a result, our research included 12 hemodialysis centers, encompassing 943 patients on chronic hemodialysis.

For data collection, our researcher used a structured data-gathering sheet to interview patients directly at the hemodialysis centers. The sheet included questions on patient demographics, such as age, male/female, employment, education, and marital status. Questions also covered characteristics of the disease and hemodialysis, including the duration of dialysis, the number of sessions per week, type of access for hemodialysis, and family history of CKD. In addition, interview questions also addressed reasons for declining a kidney transplant, categorized into 4 main groups: side effects of immunosuppressant therapy, unfavorable outcomes in other patients, the possibility of causing undesirable consequences, and other reasons not included in the previous categories or newly stated by patients. An optional section asked patients whether they believed a kidney transplant might be harmful to them, even if this belief was not confirmed by their health care professional.

The study protocol adhered to the principles outlined in the Helsinki Declaration and was approved by the Institutional Review Board of Shiraz University of Medical Sciences (IR.SUMS.MED.REC.1403.052). The purpose of the study was explained to the patients, and patients were given an informed consent form before the interview. By signing the consent form, patients agreed to participate in the study.

We used Statistical Package for the Social Sciences software, version 16.0 (SPSS Inc), to analyze data. We expressed qualitative data as numbers and percentages and analyzed qualitative data using the ?2 test. We presented quantitative data as mean and standard deviation and analyzed quantitative data using the independent t test. P < .05 was considered statistically significant.

Results
In this study conducted across 12 hemodialysis centers affiliated with the University of Medical Sciences of Shiraz, there were approximately 943 patients on chronic hemodialysis. Among them, 67 patients (7.1%) were under age 18 years, leaving a cohort of 876 patients. Each of these patients had been undergoing dialysis for a minimum of 6 months and were aged 18 years or older. Among this cohort, 530 patients declined to participate or presented with confirmed contraindications for kidney transplant. Of the remaining 346 patients, 83 patients (24.0%) were already on waiting lists for kidney transplant. Ultimately, our study comprised 263 patients who were willing to accept or had refused kidney transplant; 1 of the 263 patients had a previous kidney transplant.

Among the 263 study patients who completed the survey form, 57.8% (n = 152) were men; mean age was 60.2 ± 16.8 years (range, 19 to 92 y). Of the 263 study patients, 81.7% (n = 215) were married and 77.2% (n = 203) were unemployed. The most common causes of kidney failure among patients were hypertension (27.0%, 71 patients) and diabetes mellitus (18.6%, 49 patients). The mean duration of dialysis was 4.4 ± 4.8 years, with 57.4% having undergone dialysis for at least 2 years. Most patients (69.6%) received dialysis 3 times per week. The demographic and baseline characteristics of the study population are shown in Table 1.

The mean age of patients on the kidney transplant waiting list was 51.7 ± 16.4 years, whereas the mean age of those who declined a kidney transplant was 60.2 ± 16.8 years (P < .001). A notable contrast was shown between age groups: among patients on waiting lists for kidney transplants, 47.0% of patients were below aged 50 years; among those who declined transplant procedures, 24.7% of patients were below aged 50 years (P < .001). However, no significant differences were shown among other groups (P > .05) (Table 1). In addition, 68.7% of patients on waiting lists were married, compared with 81.7% of patients who declined kidney transplant (significant at P = .011).

Reasons for refusing kidney transplant were multifaceted, and patients were permitted to provide multiple reasons for declining a kidney transplant (Table 2). The most common reasons cited were patient-centric barriers (47.7%), unfavorable transplant outcomes in fellow patients (25.1%), concerns about the side effects of immunosuppressive therapy (22%), and health care system-related issues (5.2%).

In the category of patient-centric barriers to transplant, patients commonly cited concerns on the perceived complexity of the kidney transplant process (33.7%) and the unacceptability of outcomes (30.2%), reflecting uncertainties surrounding surgical success, recovery processes, organ function, long-term prognosis, and potential improvements in quality of life.

Unfavorable transplant outcomes among fellow patients emerged as the next most prevalent category of responses. Within this category, the most commonly expressed concern among patients was the risk of returning to dialysis after kidney transplant surgery (41.3%). Within the category of side effects of immunosuppressive therapy, patients expressed concerns mostly about vision problems (25.4%).

The category with the fewest responses pertained to health care system-related reasons for not undergoing transplantation. Within this category, the predominant reason cited by most patients (70.2%) was the lack of adequate guidance or advice regarding kidney transplant.

In the category of patient-centric barriers to transplant, difficult processes and unacceptable outcomes were further analyzed by subcategory (Table 3). In the category of difficult processes, most responses were about financial stress (37.5%). About 59.7% of the patients who chose financial stress as their reason were unemployed. The category of unacceptable outcome included a spectrum of concerns, with most responses indicating fear of transplant rejection (52.7%).

Patients were surveyed on potential concerns about their perceived risks associated with kidney transplant, that is, reasons to oppose transplant believed by patients but not verified by health care professionals. Most patients (68%) perceived their heart disease as a potential risk factor for kidney transplant. In addition, 18.6% of patients identified persistent infections, such as urinary tract infections, respiratory infections, diabetic ulcer infections, and others, as barriers to kidney transplant. Patients who identified old age as a risk factor for kidney transplant had an average age of 80 years. Among patients who stated familiarity with dialysis as their rationale for declining a kidney transplant, 68% had been undergoing dialysis for over 2.5 years (Table 4).

Discussion
Kidney transplantation is widely known to enhance the quality of life of patients with ESRD. However, many patients still choose to decline this option. Our study aimed to uncover the most common reasons behind this decision. We found that the main reasons for declining a kidney transplant were related to personal barriers. The most frequently mentioned issues were difficulties with the transplant process, such as financial concerns (144 responses, 33.7%), fear of rejection (129 responses, 30.2%), and worries about the unpredictability of the outcomes (103 responses, 24.1%).

In a 2013 study from Nizi??Kos and colleagues in Slovenia involving 164 adult patients on chronic dialysis, side effects of immunosuppressive medication (31.6%), unpredictable transplant results (29.8%), and poor outcomes in other patients (28.1%) were the main reasons for refusal of transplant. In contrast, our study identified financial concerns as the primary issue, likely due to different socioeconomic conditions. Both our study and the previous study showed the importance of educating patients about potential side effects of immunosuppressive medications. In addition, many patients preferred to remain on dialysis, which they were familiar with, rather than risk a transplant.

In a 2019 qualitative study from Senghor and colleagues conducted in France, patient beliefs about maintaining body integrity and doubts about the benefits of transplant were the main reasons for refusal of transplant. These results highlight the importance of proper patient education, a point that our study supports, although such beliefs were less frequently mentioned by our participants. This finding emphasized the need to address affordability and build trust between physicians and patients.

In a 2020 study from Brazil, de Lima Silva and colleagues showed that patients viewed transplant as another form of treatment with its own uncertainties rather than a cure. Our study also showed that patients had concerns about the uncertainties around kidney transplant. Similar to our study, patients in the previous study also expressed concerns about the adequacy of communication and information provided by health care professionals. Effective communication and health education by nurses and doctors are crucial to improve transplant acceptance among patients with CKD on hemodialysis.

In a 2021 study from Saudi Arabia, Alobaidi and colleagues reported that main reasons for low kidney transplant rate were lack of donors, concerns about long-term difficulties, and surgical complications, with financial burdens being less important because of free access to government transplant centers. This contrasted with our findings, where financial stress was a major issue, showing the difference between the health care systems.

In 2015 study from Sudan, reluctance to accept kidneys from living donors (34.8%), fear of surgery (18.1%), and financial concerns (17.6%) were given as main reasons for refusal of transplant. In contrast, our study found that not accepting kidneys from living donors was not a major reason for refusal, possibly due to sociocultural and religious differences between Iran and Sudan. Both studies noted that older patients were more likely to refuse a transplant.

In a 2023 study from Iran, Biabani and colleagues also identified financial concerns as the primary reason for refusal, aligning with our findings. However, the previous study focused on patients on peritoneal dialysis, whereas our study included patients on hemodialysis. Both our study and the previous study emphasized the need for financial support and patient education to mitigate post-transplant complications and improve acceptance rates.

In a 2017 study from Saudi Arabia, Alansari and colleagues found that age, marital status, and duration on hemodialysis influenced willingness to undergo transplant. Findings on age and marital status, but not hemodialysis duration, were similar to our study. Common reasons for refusal included fear of graft failure, surgical complications, and satisfaction with hemodialysis. Financial concerns were less prevalent in the previous study because of free medical care, leading to higher transplant willingness.

The most common reason for refusal was the difficulty of the transplant process, including financial concerns and the lengthy procedure. Financial stress was a major issue, suggesting a need for better financial aid and insurance coverage, as supported by studies in Sudan and Iran. Fear of rejection was the second most common reason, consistent with a study in Brazil; this issue can be mitigated by reassuring patients and informing them about advancements in rejection prevention, including improved testing and suppression therapies that have greatly decreased the likelihood of rejection.

Unpredictable outcomes in our study included uncertainties about surgical success, recovery processes, organ function, long-term prognosis, and potential improvements in quality of life; these concerns were also prevalent in the previous study from Senghor and colleagues.

Unwillingness reflected a patient’s lack of desire or readiness for transplant, influenced by personal, psychological, or logistical factors, such as beliefs, values, and religious and cultural considerations, which were among the common reasons in the study from Senghor and colleagues and the Sudan study. Similar to previous studies, unfavorable outcomes in other patients led to concerns, particularly return to dialysis in other patients, highlighting the effects of peer opinions on decision-making.

Side effects of immunosuppressants, like vision issues, mobility problems, new-onset diabetes, and infection risks, were prevalent concerns in our study. Similar issues were reported by Nizi??Kos and colleagues and Biabani and colleagues. Despite these concerns, the benefits of kidney transplant often outweigh the risks; therefore, thorough patient education on these medications is crucial.

Insufficient information about the procedure was another major reason for refusal, with some patients reporting a lack of recommendation or adequate information from health care professionals. This was highlighted previously, in which better predialysis education about transplant was noted as a way to influence patient preferences.

Our findings emphasize the need for improved insurance coverage and financial aids to alleviate financial concerns and streamline the transplant process, as noted previously by Biabani and colleagues.

Patient education is vital for acceptance and success, helping patients understand the benefits, risks, and long-term outcomes of transplant. Education also dispels myths and misconceptions, encouraging more informed decisions and better adherence to posttransplant care.

Limitations
Our study had some limitations. Some participants were excluded because of lack of informed consent. This could have caused distortions in the results, as the unwilling participants may have had different reasons to decline a kidney transplant. Another limitation of our study is that it did not include patients on peritoneal dialysis; therefore, the study did not represent the entire population of patients on dialysis.

Conclusions

Our study showed that the most common reasons for patients to decline kidney transplant were difficulties with the transplant process, unacceptability of transplant outcomes, and concerns about the unpredictability of outcomes. To increase acceptance rates, financial concerns must be addressed through improved insurance coverage and financial aid. Comprehensive patient education about the benefits, risks, and advancements in transplant can help reduce fears and improve decision-making, leading to more successful and sustainable transplant outcomes.

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