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NDT Advance Access originally published online on May 15, 2006
Nephrology Dialysis Transplantation 2006 21(9):2569-2576; doi:10.1093/ndt/gfl218
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© The Author [2006]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Original Articles: Dialysis and Transplantation

The influence of socio-demographic factors, treatment perceptions and attitudes to living donation on willingness to consider living kidney donor among kidney transplant candidates

Deborah Zimmerman1, Shelley Albert2, Hilary Llewellyn-Thomas3 and Gillian A. Hawker4–8,

1 Department of Medicine, Division of Nephrology, University of Ottawa and the Kidney Research Centre of the Ottawa Hospital Research Institute at the Ottawa Hospital, Riverside Campus, Ottawa, ON K1H 7W9 and 2 Department of Medicine, Division of Nephrology, University of Toronto, Toronto, ON M4N 3M5, Canada, 3 Department of Community and Family Medicine, Dartmouth Medical School, Dartmouth College, Hanover, NH 03755, USA, 4 Department of Medicine, Division of Rheumatology, University of Toronto, 5 Department of Health Policy, 6 Department of Management and Evaluation, 7 Department of Arthritis Community Research and Evaluation Unit, University Health Network Research Institute and 8 Institute for Clinical and Evaluative Sciences, Women's College Campus of Sunnybrook, Toronto, ON M5S 1B2, Canada

Correspondence and offprint requests to: Deborah Zimmerman, Assistant Professor, Department of Medicine, Division of Nephrology, University of Ottawa and the Kidney Research Centre of the Ottawa Hospital Research Institute at the Ottawa Hospital, Riverside Campus, 1967 Riverside Drive, Ottawa, ON K1H 7W9, Canada. Email: dzimmerman{at}ottawahospital.on.ca



   Abstract
Top
 Abstract
Introduction
 Subjects and methods
 Results
 Discussion
 References
 
Background. Living donor, compared with cadaveric donor kidney transplantation, is associated with prolonged graft survival and increased life expectancy for patients with end-stage renal disease (ESRD). However, access to living donor transplantation remains variable. Our objective was to further our understanding of the factors associated with the willingness to consider living donor kidney transplant (LDKTx).

Methods. All patients from two tertiary care hospitals being assessed for a LDKTx (n = 81), and a random sample of patients on the waiting list for a cadaveric kidney transplant (CDKTx, n = 133) were invited to participate. A mail survey assessed participants’ socio-demographic characteristics, and perceptions of dialysis, CDKTx and LDKTx. Multivariable logistic regression was used to assess the influence of these factors on willingness to consider LDKTx.

Results. Adjusting for patient age, employment status and number of close relatives, willingness to consider an LDKTx was independently associated with a lower perceived risk of peri-operative complications to the donor (adjusted OR 3.59, P = 0.02), the perception that the recipient would live longer following living donor transplantation (adjusted OR 4.34, P = 0.003) and greater perceived appropriateness of asking a family member to donate a kidney (adjusted OR 5.06, P = 0.007).

Conclusion. Among the ESRD patients studied, adjusting for key factors that may be associated with access to LDKTx, perceptions about risks to the donor and benefits to the recipient were independently associated with a willingness to consider LDKTx as a treatment option. Provision of standardized comprehensible information about all treatment options to patients with ESRD may improve acceptance rates for living donor transplantation.

Keywords: benefit; dialysis; living donor kidney transplantation; risk; willingness



   Introduction
Top
 Abstract
 Introduction
Subjects and methods
 Results
 Discussion
 References
 
Compared with cadaveric kidney transplantation, living donor transplantation has been associated with improved kidney function and increased life expectancy for patients with end-stage renal disease (ESRD) [1–3]. Furthermore, the long-term risks to the living kidney donor are very low [4]. Despite this, there remains significant variability in the percent of transplanted kidneys that are from living donors overall [5,6], as well as by sex, race and socio-economic status [7–9]. Possible explanations for the variability in the use of living kidney donor transplantation include the effect of socio-demographics and health beliefs, including preferences for care, individual and family/community-level factors that relate to access to living donor transplantation, such as the availability of a potential donor, and both demonstrable and perceived need for the treatment [9–13]. Although many of these factors are not modifiable through targeted interventions, individuals’ perceptions of the risks and benefits of a treatment have been shown to influence their preferences for care and may be modifiable through educational strategies.

The primary objective of our study was to assess the influence of socio-demographic factors and perceptions regarding ESRD treatment options, including attitudes about kidney donation, on the willingness to consider living donor kidney transplant (LDKTx) among ESRD patients eligible for transplantation.



   Subjects and methods
Top
 Abstract
 Introduction
 Subjects and methods
Results
 Discussion
 References
 
The University of Toronto Human Ethics Committee approved the study protocol. All English-speaking patients with ESRD who were to receive their first kidney transplant at the University Health Network (UHN) were eligible for the study. Prior to being listed for kidney transplantation, all patients were provided with information on the risks and benefits of kidney transplantation via group and individual education sessions. We included two groups of patients: individuals who had one or more potential living donors undergoing assessment (LDKTx group, n = 81); and a sex-matched random sample drawn from a list of 594 ESRD patients registered with the Multi-organ Retrieval Registry [cadaveric kidney transplant (CDKTx) group, n = 133]. Consenting participants completed and returned by mail a standardized self-administered questionnaire.

Study questionnaire
Questionnaire items were generated from the published literature, personal experience and expert opinion regarding factors that affect patient decision making around living donor kidney transplantation. The questionnaire was designed at the grade 5 reading level, and pilot-tested on a convenience sample of 18 haemodialysis patients who were not eligible for the study. After revisions for content and comprehensiveness, we re-tested our questionnaire in a subset of these patients to ensure ease of completion and clarity of questions and response options. Additional revisions were then made as appropriate prior to its use (questionnaire available on request).

Socio-demographic characteristics
All participants were asked to report their age, sex, level of education, employment status, race, marital and dialysis status. They were asked the number and ages of all first-degree relatives including their spouse, the number of family members with whom they were ‘close’ and the number of individuals who had volunteered to donate a kidney, if any. They were also asked about the importance of spirituality in their lives, from ‘extremely important’ to ‘not at all important’.

Perceptions of dialysis
Participants were asked to estimate the likelihood of developing heart disease, bone disease, infection and hypertension with long-term dialysis (5-point Likert scales from ‘never’ to ‘always’ or ‘don't know’).

Perceptions of transplantation
(i) Recipient effects—participants were asked to estimate the long-term likelihood of developing heart disease, bone disease, infection and hypertension after transplantation. They were asked questions, which type of renal transplant they think is associated with longest graft survival (living donor kidney; cadaveric donor kidney; no difference or ‘don't know’), and which treatment option for ESRD is associated with the greatest recipient longevity. (ii) Donor effects—participants were asked to estimate the likelihood that the living donor would develop peri-operative complications, kidney failure and premature death (from ‘not at all likely’ to ‘extremely likely’).

Attitudes about kidney donation
Participants were asked their opinions about the appropriateness of asking a relative for a kidney donation (from ‘totally inappropriate’ to ‘totally appropriate’), and to estimate the likelihood of feeling guilty and experiencing deterioration in their relationships with family members as a result of requesting a kidney donation (from ‘not at all likely’ to ‘extremely likely’).

Willingness to accept a living donor kidney
Participants were asked if they would be willing to receive a kidney from a living donor if one were available (yes/unsure/no). If they reported unwillingness, they were asked to specify why.

Statistical analysis
Descriptive statistics were used to compare the socio-demographic characteristics, perceptions of transplantation and dialysis, attitudes about living donor transplantation and willingness to consider LDKTx for the CDKTx and LDKTx groups. To adjust for multiple comparisons, in all bivariate analyses, statistical significance was considered at a two-tailed level of 0.01. Logistic regression was used to evaluate the relationship between each of the socio-demographic factors, treatment perceptions and attitudes about LDKTx and willingness to consider LDKTx, individually. Variables associated with willingness at a P-value ≤0.10 were then entered into a multiple logistic regression model to examine the independent effect of patients’ treatment perceptions and attitudes about LDKTx on willingness. The collinearity of covariates was assessed using chi-square statistics and Spearman correlation coefficients, as appropriate. Highly correlated pairs of variables (R > 0.5) were not included together in the models. The goodness of fit of the final models was assessed using the Hosmer and Lemeshow goodness-of-fit statistic [14]. For the multivariable model, statistical significance was considered at a two-tailed level of 0.05.



   Results
Top
 Abstract
 Introduction
 Subjects and methods
 Results
Discussion
 References
 
Response rates
Of the 133 patients randomly selected from the CDKTx waiting list, 11 were ineligible (two deceased, one had already undergone transplantation, six had language barriers, one also on the living donor list and one unable to be contacted). Of the remaining 122 patients, 85 (70%) responded to the survey. Of the 81 patients being assessed for an LDKTx, six were ineligible (five underwent transplantion, one patient was actually a potential donor). Of the remaining 75 patients, 61 (81%) responded to the survey. Nineteen of the 61 respondents (31.1%) had never experienced dialysis. Responders and non-responders were similar in age, sex and hospital referral centre.

Socio-demographic characteristics
The characteristics of the cohort are shown in Table 1. Compared with the CDKTx participants, those in the LDKTx group were younger (P < 0.0001) and more likely to be working full or part time (P = 0.002). Although similar proportions in both groups had children, the mean age of the LDKTx participants’ children was lower (P = 0.0001). There were no between-group differences in the number of first-degree relatives or ‘close’ relatives, but more members of the LDKTx group had a family member volunteer to donate a kidney (2.8 vs 1.0, respectively, P < 0.0001).


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  		Table 1. Socio-demographic characteristics of the cohort

 
Perceptions of dialysis (Table 2)
Since almost one-third of the LDKTx group had never experienced dialysis, LDKTx participants’ responses were stratified by prior dialysis experience. Regardless of dialysis experience, risk perceptions were similar for all groups. The proportion who reported that they ‘did not know’ the dialysis-associated risk varied from a low of 8.2% for hypertension to over one-quarter of participants for both heart and bone disease. Of those who voiced an opinion, the risk of hypertension was seen as highest (60% reported hypertension occurring ‘most’ or ‘all of the time’ with long-term dialysis) and lowest for heart disease (only 24.3% reported this complication occurs ‘most’ or ‘all of the time’).


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  		Table 2. Perceptions of dialysis

 
Perceptions of transplant (Table 3)
As for the risks associated with dialysis, a significant proportion of participants reported not knowing the recipient risks associated with transplantation (Table 3). Among those with an opinion, the distribution of responses was similar for the two groups, and perceived risk was generally lower than that reported for dialysis. Although the perceived risks to the donor were low overall (fewer than 10% perceived peri-operative complications, premature death or kidney failure to be ‘likely’ or ‘very likely’ in the donor), LDKTx participants perceived all donor risks to be lower than did the CDKTx participants (Table 3). Three-quarters of the LDKTx group (75.0%) compared with 51.8% of the CDKTx group (P = 0.005) assumed patient survival to be greatest with a living donor kidney.


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  		Table 3. Perceptions of transplantation

 
Attitudes about kidney donation
Overall, 41.1% of the participants felt that it was ‘appropriate’ or ‘completely appropriate’ to ask a family member to donate a kidney and 52/146 (35.6%) had done so. Compared with the CDKTx participants, LDKTx participants were both more likely to believe that asking is appropriate (52.5% LDKTx vs 32.9% CDKTX, P = 0.005) and to have done so (47.5 vs 27.1%, P = 0.01). Only 18.5% of the participants reported that having a family member to donate a live kidney would be ‘likely’ or ‘very likely’ to adversely affect the donor–recipient relationship (14.87% LDKTx vs 21.1% CDKTx, P = 0.32), while overall 35.6% (39.3% LDKTx vs 32.9% CDKTx, P = 0.43) felt that this was ‘likely’ or ‘very likely’ to cause feelings of guilt in the recipient.

Willingness to accept a living donor kidney transplant
Of the 61 participants in the LDKTx group, 60 (98.%) were willing to accept a living donor kidney, one (an individual on dialysis) was unsure and none was unwilling. Of the 85 participants in the CDKTx group, 49 (56.5%) were willing to accept a living donor kidney, 17 (19.8%) were unsure and 20 (23.3%) were unwilling. Four individuals reported having no close relatives—three of the four indicated willingness to accept a living donor kidney if it were available. Similarly, one of the two individuals with no first-degree relatives was willing to accept a living donor kidney.

Of the 20 patients who were unwilling to accept a living donor kidney, 15 had been offered one by a family member or friend. In making the decision not to accept a living donor kidney, three of the 20 patients decided immediately without weighing the pros and cons of living donor transplantation. Of the 17 patients who considered the risks and benefits, more than 50% (9/17) were most concerned about the risk of peri-operative complications to the living donor. In addition, four patients were concerned about the donor being left with a scar. Two patients also cited the family member's time away from work as a concern. One refused to accept a kidney from her children as she was concerned about her kidney disease being hereditary. None of the patients stated that the potential benefit to them of living donor transplantation was an important determinant in deciding not to accept a living donor kidney.

In bivariate analyses, the willingness to consider LDKTx was associated with each of the socio-demographic factors, treatment perceptions and attitudes about living donation. Individuals who were willing to accept a living donor kidney were younger, less likely to be employed part-time, had more relatives, more close relatives and more relatives volunteering to donate. Willingness was also associated with a lower perceived risk of peri-operative complications to the donor and the understanding that living donor transplantation affords greater longevity than other ESRD treatment options to the patient. Finally, willingness was associated with the attitude that it is completely appropriate to ask a family member to donate a kidney and that the risk of the recipient feeling guilty following live kidney donation is unlikely. No significant effects were seen for sex, race, socio-economic status, marital status, spirituality, perception of risks to the transplant recipient or of dialysis (Table 4).


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  		Table 4. Correlates of willingness to accept an LDKTx—Results of logistic regression analysis

 
In multivariable analysis, adjusting for participants’ age, employment status, number of close relatives and number of volunteers, willingness to accept a living donor kidney remained independently and positively associated with the perception that recipient survival would be longest with a living donor transplant (adjusted OR = 4.34, P = 0.003), perceived acceptability of asking a family member to donate (adjusted OR = 5.06, P = 0.003) and that the risk of peri-operative complications to the donor is low (adjusted OR = 3.59, P = 0.02) (Table 4).



   Discussion
Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
References
 
Assuming an appropriate living donor is available, LDKTx offers the optimal form of therapy for patients with ESRD, yet access remains limited. Our objective was to deepen our understanding of the factors related to accepting/rejecting the option of living donor transplantation. In particular, we were interested in the impact of patients’ perceptions regarding the risks and benefits of various ESRD treatment options and their attitudes about living donor transplantation on willingness to consider living donor transplant as a treatment option. After adjusting for factors that may affect an individual's access to a living donor among individuals eligible for kidney transplantation, we found that willingness to accept an LDKTx was associated with their perceptions regarding the longevity benefit to the recipient, peri-operative risk to the living donor and appropriateness of asking a family member to donate a kidney.

The literature supports tremendous benefit to the recipients of living donor kidneys and low risks to the living kidney donors. In Canada, 1, 5 and 10-year recipient survival with a living donor kidney are 98, 94 and 84%, respectively, compared with 94, 83 and 68% for recipients of cadaveric kidneys [1]. Although the risks to a living donor are not zero, they are low. In a very large retrospective review of 871 donor nephrectomies, 8.2% of the patients suffered a complication. Of these, 0.2% were consider major and 8.0% minor [15]. Mortality has been quoted to be similar to any general anaesthetic at 0.03% [4]. Thus, there are clear benefits, both short- and long-term, to living vs cadaveric renal donation from the recipient's perspective that is associated with an ‘acceptable’ risk to the living donor. In general, those who indicated willingness to consider a living donor kidney, compared with those who were unwilling, were more likely to understand the risks and benefits of living donor kidney transplantation. Most of the willing patients understood that the risks of serious peri-operative complications were unlikely/very unlikely. More than half of the unwilling patients who considered the risks and benefits of living donor transplantation were most concerned about the peri-operative risks to the living kidney donor. Interestingly, a small percentage of patients were also concerned about the donor having a scar after nephrectomy; the newer laparoscopic approaches may help alleviate this concern. Both, willing and unwilling patients understood that the risk of premature death or kidney failure was unlikely/very unlikely in a living kidney donor.

In our own study, none of the 20 unwilling patients stated that the potential benefit to themselves was important in their decision not to accept a living donor transplant. The willing patients were more likely than the unwilling patients to know that an LDKTx is associated with an increased recipient life expectancy compared with a cadaveric donor transplant. The greater perceived benefits to the recipients of living donor kidneys is consistent with a previous study in which willingness was associated with better expected outcomes to the recipient of a living donor kidney [16]. In that study the majority of patients perceived a greater need for information on their transplant treatment options in spite of having sought out multiple information sources such as the Internet and Kidney Foundation. During the study, the provision of general kidney transplant information to the patients was associated with an increased awareness of recipient benefits and willingness to consider LDKTx as a treatment option [16].

However, our study suggests that the information needs of our patients go beyond information about the risks and benefits of transplantation. Participants also exhibited a lack of knowledge about cardiovascular disease, the number one cause of death for patients with ESRD [1]. The majority of patients either simply stated that they did not know or underestimated the risk of cardiovascular disease among patients with ESRD. This lack of understanding has been shown previously in a group of African-American patients who answered only 50% of the questions on the Chambers Kidney Knowledge Test correctly [17].

Clearly receiving correct information about the risks and benefits of the different treatment options is important as informed treatment choices require that both the patients and their family members understand the implications of the choices that they make. Although both the hospitals in this study offer educational programmes, the effectiveness of these programmes has not been evaluated. Also, once the patients have started dialysis, ongoing formal education is not provided. Standardized educational programmes, perhaps with the use of validated decision aids, would help to inform patients and limit bias (if it exists) of healthcare professionals. Furthermore, it is critical that family members also receive education. In a recent study of the general population, people who were less concerned about the possibility of developing kidney failure as a result of donation were much more willing to consider being a living kidney donor [18]. Education of family members about the risks and benefits of the various ESRD treatment options has the potential to increase the number of medically suitable family members who would volunteer to be living donors.

Willingness was also associated with the perception that it was ‘completely appropriate’ to ask a family member to donate a kidney. In many renal transplant centres—including the ones in which this study was performed—it is the responsibility of the patient to solicit possible family members to be their donor. In this study, only 40% of the participants considered it ‘appropriate’ or ‘completely appropriate’ to ask a family member to donate a kidney. Reliance on the patient to identify a living kidney donor, therefore, probably represents a significant barrier to living donor transplantation. Those who considered it inappropriate to ask were significantly less likely to have done so. These findings are consistent with those from another Canadian study where, although all wait-listed patients were able to identify at least one potential donor, less than 13% of these potential donors had undergone an evaluation [19]. It is unclear from this study if more potential donors would have volunteered if they truly understood the risks and benefits of living donor kidney transplantation, relieving the recipient of the responsibility for finding a potential donor.

Although race and gender have been important determinants of receiving a living donor transplant, consistent with a prior study by Kranenburg et al. [16], the willingness to accept a living donor transplant was unrelated to gender and race in their study and ours. However, the willingness to accept a living donor transplant does not necessarily translate into an actual live kidney donor transplant. Female patients with ESRD have been found to have less potential donors among spouses and opposite-sex volunteers from friends and non-first-degree relatives [20].

There are several potential limitations to this study. First, we chose to focus our attention on individuals’ willingness to consider a living donor kidney rather than receipt of LDKTx as our outcome. We acknowledge that the lack of a potential living kidney donor might negatively impact a patient's perceptions regarding the risks and benefits of living donor kidney transplantation, and thus their reported willingness to accept a living donor kidney. However, the fact that the majority of patients who were unwilling to accept a living donor kidney had been offered one and that those patients without a potential donor (close family members) indicated willingness to accept a living donor kidney argues against this. In the absence of information regarding which participants in the CDKTx group had undergone prior assessment for LDKTx, and also on the availability of a medically suitable donor, we adjusted our analyses for the number of relatives to which the participant was close, and also the number of individuals who volunteered to donate as a means of adjusting for ‘access to a donor’. Second, patients who are being assessed for living donor transplant (98% of whom were willing) may simply be ‘closer in time’ to the educational programme. This perhaps explains their more accurate assessment of the risks and benefits of living donor transplantation. Third, our questionnaire was developed based on judgments about the issues that affect living donor transplantation from the literature, and on expert opinion. The actual forces affecting the decision to accept a living donor kidney may not have been captured adequately using this approach. Fourth, our findings are based on a predominately Caucasian population, within a publicly funded healthcare system, and therefore may not be generalizeable to other healthcare settings.

In summary, potentially modifiable barriers to accepting an LDKTx as an ESRD treatment option were identified. Specifically, ESRD patients lacked knowledge regarding the risks associated with long-term dialysis; many also had misperceptions regarding the risks and benefits of LDKTx. This is important as these misperceptions were significantly linked to a lack of willingness to consider LDKTx as a treatment option. A second important barrier to consideration of LDKTx that was identified was the current onus placed on the patient to identify, and seek out, a potential living kidney donor. Both these potential barriers may be addressed through the development and implementation of standardized, culturally sensitive educational interventions directed at all ESRD transplant candidates and their families about the risks and benefits of ESRD treatment options, including living donor transplantation.



   Acknowledgments
 
The authors would like to thank the transplant coordinators at the Toronto University Health Network, and Angela Wall, for their invaluable assistance. This study was part of D.Z.'s Clinical Epidemiology Masters Thesis. The Clinician Scientist Training Program at the University of Toronto supported her during this time.

Conflict of interest statement. None declared



   References
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 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 

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Received for publication: 4. 5.05
Accepted in revised form: 29. 3.06


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