The General Public's Concerns about Clinical Risk in Live Kidney ...

Copyright C Munksgaard 2002

American Journal of Transplantation 2002; 2: 186–193 Munksgaard International Publishers

ISSN 1600-6135

The General Public’s Concerns about Clinical Risk in Live Kidney Donation L. Ebony Boulwarea,d, Lloyd E. Ratnerb, Julie Ann Sosab, Alexander H. Tub, Satish Nagulaa, Christopher E. Simpkinsb, Raegan W. Duranta and Neil R. Powea,c,d,*

cess to transplantation and improved patient and graft survival rates at 1 and 3 years (1–3). Despite the benefits of live donor transplantation, however, there is substantial difficulty attracting donors (1, 5–7).

Departments of a Medicine and b Surgery, Johns Hopkins School of Medicine, c Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, and d Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, 2024 East Monument Street, Baltimore, MD, USA * Corresponding author: Neil R. Powe, [email protected]

Several studies indicate that both perioperative and longterm donor complication rates for well-screened donors are low and may be perceived as minimal by clinical experts (8– 10). Nevertheless, it is unknown how potential donors view their own risk in undergoing surgery for which the expectation may be that the psychological reward outweighs the risk of physical harm. It is clear that people who are deciding whether or not to donate will have concerns that should be addressed, as highlighted by the Live Organ Donor Consensus Group. These include time away from work with possible loss of income, time away from routine daily activities and family members during the postoperative period, and incidental expenses incurred as a result of having to undergo the procedure and the recovery period. Information relating to the expected outcome for transplant recipients will also play an important part in the decision-making process of potential donors (11–13).

Difficulty in attracting live kidney donors may be related to fears regarding both the surgical procedure for kidney harvesting and future failure of the remaining kidney. We conducted a cross-sectional study of households in Maryland to identify public disincentives to living related kidney donation. In multivariate analyses, we assessed the independent effects of several factors on willingness to donate a kidney to a sibling. We also assessed thresholds for factors above which persons would not donate a kidney. Of 385 participants, 66% were extremely willing to donate to a sibling. After adjustment, those who considered the length of a hospital stay, out-of-pocket expenses, size and appearance of a scar, the time it takes to get to the transplant center, and the donor risk of developing kidney failure very important had 50–60% less odds of being extremely willing to donate. Median acceptable levels for risk of complications, hospital stay, compensated and uncompensated time from work, time requiring pain medications, and out-of-pocket expenses were greater than levels from clinical evidence regarding both laparoscopic and open nephrectomy. Unrealistic concerns among the general public regarding live donation may serve as potential disincentives to donation. Efforts to educate the public regarding live donation might help assuage fears and attract those who may not otherwise donate. Key words: Clinical risk, donation, kidney, living-related, transplantation Received 6 July 200, revised and accepted for publication 4 October 2001

Introduction Live donor kidney transplantation is associated with improved medical outcomes over cadaveric transplantation, with recipients of live donor transplants often having more timely ac186

Few studies have evaluated whether willingness to donate is directly related to fears about the perioperative and long-term potential surgical risks and personal compromise (e.g. lost income). If the public’s concerns regarding the procedure were known, designing programs to inform potential donors long before the need for donation or early in the donation process may not only serve to attract donors, but may also serve to augment the informed consent process when donation is actually being considered. We conducted a study among the general public to identify fears that might inhibit a person’s willingness to donate a kidney to a family member.

Methods Study design and population Our study was a cross-sectional survey, designed to ensure the random selection of respondents with diverse demographic characteristics resembling those of the potential kidney donor population in the Baltimore (MD) metropolitan area. The study population was defined as all residents living in 14 zip codes in the Baltimore area, including inner city, suburban, and rural areas. Households with a telephone were sampled at random using random-digit selection of telephone numbers. Subjects were required to be between the ages of 18 and 75 and were excluded from participation if they had a personal history of kidney failure or kidney disease, kidney transplant, congenital defect of the kidney, or a history of having donated a kidney. The survey was approved by the Institutional Review Board at the Johns Hopkins Medical Institutions.

Disincentives to Live Donation Survey administration Telephone numbers were drawn by random selection with equal probability sampling techniques (14). Three trained interviewers placed telephone calls and administered the survey. If there was no answer at one of the selected telephone numbers, the number was called back with a minimum of eight repeat calls. Repeat calls were made at all times of the day, including early and late morning, afternoon, early and late evening, and weekends. Once a household was reached, random respondent selection within households was accomplished using the Troldahl–Carter–Bryant method (15). No substitutions were permitted; persons other than the randomly selected individual within that household were not interviewed. If the selected person was unavailable, arrangements were made to call that person back at another time. Questionnaire content The 20-minute survey instrument was designed to assess information about potential donors’ attitudes, opinions, and disincentives to live kidney donation. Respondents were asked about: their willingness to donate a kidney to different family members in the event their family members had end-stage renal failure; their concerns about the surgical procedure itself; their trust in the health care system; sociocultural concerns regarding religion and spirituality; medical concerns; and socioeconomic concerns. Additionally we collected information from respondents on age, gender, race, education, total household income, marital status, number of dependents, insurance status, and number of co-morbid conditions. To assess willingness to donate a kidney to a family member, participants were asked: ‘How would you rate your willingness to donate to the following family member?’ Answers for ‘your parent’, ‘your child’, ‘your sibling’, and ‘your spouse’ were in Likert scale format, and consisted of ‘not willing’, ‘slightly willing’, ‘moderately willing’, ‘very willing’, and ‘extremely willing’. We hypothesized that the public’s concerns about factors related to the surgical procedure of donating a kidney might serve as potential disincentives to becoming a donor. To assess this question, we related willingness to donate a kidney to a sibling to potential concerns regarding the surgical procedure for kidney donation that persons might experience. Respondents were asked the importance of the following factors in making a decision to donate a kidney to any family member: (i) ‘the likelihood that you may have complications (like a wound infection or bleeding) after the operation to remove your kidney’; (ii) ‘the amount of time that you would have to stay in the hospital’; (iii) ‘the amount of (financially compensated) time that you would be unable to return to your normal daily activities, such as your job or housework’; (iv) ‘the amount of time that you would be without pay because you are unable to return to work’; (v) ‘the number of days you would require prescription pain relievers (such as Tylenol with codeine or Percocet)’; (vi) ‘the amount of out-of-pocket expenses’; (vii) ‘the size and appearance of the scar from the operation’; (viii) ‘the amount of time it takes to get to the transplant center’; (ix) ‘the risk of you developing kidney failure in the future’; and (x) ‘the availability of someone to help you during the recovery period (such as friends or family)’. Responses were in Likert scale format: ‘not’, ‘slightly’, ‘moderately’, ‘very’, ‘extremely’. For questions regarding the likelihood of complications, uncompensated and compensated time away from work, time requiring pain medications, out-of-pocket expenses, size and appearance of the scar, and time to get to the transplant center, respondents were also asked questions regarding the maximum threshold level of each factor they would be willing to accept in making a decision to donate. For example, regarding the potential risk of complications, respondents were asked: ‘Would you donate a kidney if there was 15% chance of your developing complications?’ If respondents answered ‘yes’, the interviewer would then ask the same question with incrementally increasing values for the risk of complications (e.g. ‘Would you donate a kidney if there was a 20% chance of your developing kidney failure?’) until the respondent answered ‘no’. Likewise, if the respondent

American Journal of Transplantation 2002; 2: 186–193

answered the initial question ‘no’, the interviewer would then ask the same question with incrementally decreasing values for the risk of complications (e.g. ‘Would you donate a kidney if there was a 10% chance of your developing kidney failure?’) until the respondents answered ‘yes’. The highest level of risk the respondent would consider acceptable was considered to be that person’s threshold value for donating. In asking threshold questions, interviewers provided respondents with ranges of possible threshold values based on reasonable likely occurrences in current clinical practice (16–20). We also hypothesized that people’s concerns regarding the potential risk of recipient graft failure might affect their willingness to donate a kidney. To assess this question, we related willingness to donate a kidney to a sibling with willingness to donate a kidney if there was a 50% chance of kidney failure. Similarly, we assessed the median threshold value for risk of recipient graft failure above which respondents would no longer donate. Statistical analysis We sought to identify factors associated with less than the highest possible willingness to donate a kidney to a family member. Thus, when assessing the relation of independent variables to willingness to donate, we dichotomized willingness to donate into ‘extreme’ willingness versus ‘less than extreme’ willingness to donate. Importance of surgical factors was dichotomized to ‘very or extremely important’ versus ‘less than very important’ for each factor. Chi-squared analysis was used to assess bivariate relationships between sociodemographic variables and willingness to donate. Simple and multivariate logistic regressions were performed to assess the relation between surgical factors and willingness to donate. For multivariate analyses assessing the relation between importance of surgical factors and willingness to donate, logistic regression was performed with adjustment for respondent age, co-morbidities, race, and gender. To assess the relative importance of each concern in affecting people’s willingness to donate, we evaluated the amount of variation in willingness to donate that was explained by each concern by calculating the value of the squared multiple correlation coefficient (21). Using multiple logistic regression, we determined the incremental amount of variation in willingness to donate explained by each concern by adding each concern to the multivariate model in sequence. In comparisons of distribution of median threshold values, the Mann–Whitney two-sample statistic was used (22). A two-sided p-value of less than 0.05 was considered statistically significant. We present results of concerns related to willingness to donate a kidney to a sibling in this paper; results for willingness to donate to a parent, a child, and a spouse were similar. To test whether results might change if we were to exclude persons with co-morbid conditions from the analyses, we performed all analyses excluding these respondents. The results were essentially the same; thus, we report results on the entire cohort in the paper. In addition, to test whether dichotomizing willingness to donate into ‘extreme’ versus ‘less than extreme’ willingness to donate would influence results, we performed multinomial logistic regression, including the identical independent variables and potential confounders as in our binary logistic regression models. Results from our multinomial logistic regressions were similar; thus we present only results in which willingness to donate is dichotomized. Descriptive and comparative analyses were performed using STATA Statistical Software: Release 6.0 (Stata Corporation, College Station, TX).

Results Response rate and characteristics of study population A total of 460 homes were contacted and agreed to randomization of respondents within the household. Of these homes, 187

Boulware et al.

385 participants agreed to participate (84%). The study population was similar to the underlying population from which telephone numbers were drawn based on 1990 census data (23) with respect to all demographic characteristics, with the exception of gender. More than half of respondents (66%) were female. The population was 47% black, 42% white, and 9% other. Respondents were well distributed with regard to age, education, and annual household income. Most participants (61%) were employed, 89% had health insurance, and 44% reported having at least one co-morbid condition of interest (Table 1). Willingness to donate Overall, respondents’ willingness to donate to a family member varied based on the relationship to that family member. A greater majority of people indicated extreme willingness to donate a kidney to a child than to a parent, a sibling, or a spouse: 311 (81%) were extremely willing to donate to a child, 257 (67%) were extremely willing to donate to a parent, 254 (66%) were extremely willing to donate to a sibling, and 256 (66%) were extremely willing to donate to a spouse. Table 2 displays the bivariate relation of respondent characteristics and potential concerns regarding the surgical procedure with their willingness to donate a kidney to a sibling. Among demographic characteristics, age and presence of co-morbid conditions were statistically significantly related to willingness to donate to a sibling in bivariate analysis. Among potential concerns related to the surgical procedure, length of stay in the hospital, need for prescription pain medications, out-of-pocket expenses, the time it takes to get to the transplant center, and the donor risk of developing kidney failure were statistically significantly associated with willingness to donate a kidney to a sibling in bivariate analysis. Respondents’ concerns regarding surgical factors and willingness to donate After adjustment for potential confounders, those who considered size and appearance of the scar, the time it takes to get to the transplant center, out-of-pocket expenses, length of hospital stay, and the donor risk of developing kidney failure very or extremely important were 50–60% less likely to be extremely willing to donate a kidney to a sibling – adjusted odds ratio (95% CI): 0.4 (0.2–0.8) for size and appearance of scar; 0.4 (0.2–0.7) for time it takes to get to the transplant center; 0.5 (0.2–0.9) for out-of-pocket expenses; 0.5 (0.3– 0.8) for length of hospital stay; and 0.5 (0.3–0.9) for the donor risk of developing kidney failure (Figure 1). Respondents’ threshold values regarding surgical factors and willingness to donate Ranges of potential values offered to respondents regarding particular surgical concerns along with median values chosen by respondents who were extremely willing to donate a kidney to a sibling versus those who were less than extremely willing to donate a kidney to a sibling are shown in Table 3. Those who indicated less than extreme willingness to donate a kidney to a sibling accepted 10% lower median values for the potential risk of complications they would accept and still 188

Table 1: Characteristics of study participants Characteristic Age (years) 18–24 25–34 35–44 45–54 55–64 65–75 Gender Female Male Race Black White Other Education High school or less 2 years college to college graduate Graduate or professional school Annual household income $0–20 000 $20 000–40 000 $40 000–60 000 $60 000–80 000 $80 000–100 000 Over $100 000 Employment status Full-time employee Part-time employee Student Retired Home-maker Disabled Unemployed Have health insurancea No Yes Number of dependents None At least one Number of co-morbid conditionsb None At least one

n

%

49 97 86 74 44 42

13 25 22 19 11 10

256 129

66 34

179 160 34

47 42 9

133 158 84

35 41 23

68 116 67 46 14 35

18 30 17 12 4 9

236 35 28 40 17 11 9

61 9 7 10 4 3 2

29 342

8 89

187 183

49 48

205 171

53 44

a Health insurance includes: Medicare, private insurance (e.g. Blue Cross/Blue Shield), Champus/Champva, Medicaid or Medical Assistance. b Co-morbid conditions were considered present if the respondent acknowledged having at least one of the following: alcohol abuse, cancer, depression or anxiety, diabetes, drug abuse, heart attack or stroke, hepatitis, HIV/AIDS, hypertension, kidney stones.

be willing to donate (20% for those less than extremely willing vs. 30% for those more than extremely willing), 1 day less hospital stay, 1 day less of financially compensated and financially uncompensated time from work, 1 week less of time requiring prescription pain medications, and at least $1500 less in out-of-pocket expenses. Distribution of median threshold values for all surgical factors were statistically significantly different when comparing those less than exAmerican Journal of Transplantation 2002; 2: 186–193

Disincentives to Live Donation Table 2: Participant characteristics and concerns related to willingness to donate a kidney Characteristic

Extremely willing to donate to a sibling n

Age (years) 18–24 25–34 35–44 45–54 55–64 65–75 Gender Female Male Race Black White Other Education High school or less 2 years college to college graduate Graduate or professional school Annual household income $0–20 000 $20 001–40 000 $40 001–60 000 $60 001–80 000 $80 001–100 000 Over $100 000 Employment status Full-time employee Part-time employee Student Retired Homemaker Disabled Unemployed Have insurance No Yes Number of dependents None At least one Presence of co-morbid conditions None At least one Concern and its importance Risk of complications Very/extremely important Not very/extremely important Length of stay in hospital Very/extremely important Not very/extremely important Financial compensated time away from work/dailyactivities Very/extremely important Not very/extremely important Financial uncompensated time away from work/daily activities Very/extremely important Not very/extremely important


%

p 0.04

40 73 51 47 24 19

82 75 60 64 57 50

169 85

66 66

123 102 21

69 64 62

88 104 54

66 66 64

44 79 41 34 8 25

65 68 62 74 57 71

156 24 20 22 13 7 5

66 69 71 55 76 64 56

19 225

66 66

122 122

65 67

150 97

73 57

128 125

62 72

76 177

56 72

78 173

62 68

135 114

62 71

0.4

0.2

0.8

0.9

0.9

0.9

0.8

⬍ 0.01

0.2

0.02

0.4

0.5

189

Boulware et al. Table 2: continued Characteristic

Extremely willing to donate to a sibling n

Need for prescription pain medication Very/extremely important Less than very important Out-of-pocket expenses Very/extremely important Less than very important Size and appearance of scar Very/extremely important Less than very important Time it takes to get to transplant center Very/extremely important Less than very important Donor risk of developing kidney failure Very/extremely important Less than very important Availability of friends or family to help during the recovery period Very/extremely important Less than very important

tremely willing with those extremely willing to donate a kidney, with the exception of size and appearance of the scars, for which the median value chosen by donors and nondonors were not statistically significantly different (p Ω0.2). Respondents’ concern regarding recipient graft failure Most respondents (81%) stated that they would donate a kidney given a risk of recipient graft failure of 50%. In both crude and adjusted analyses, those who stated they would not be willing to donate given a 50% chance of recipient graft failure were at least 70% less likely to be extremely willing to donate a kidney to their sibling (adjusted odds ratio [95% CI] Ω 0.25 [0.13–0.50]). Finally, the median threshold value for the risk of recipient graft failure at which respondents would no longer donate was 70% for those extremely willing to donate to a sibling and 50% for those who were less than extremely willing to donate to a sibling (p ⬍0.01). Relative importance of respondents’ concerns Together, concerns about clinical risk related to donation explained 6% of the variation in willingness to donate a kidney to a sibling, more than any of the other characteristics considered in the multivariate model. Respondents’ concerns about length of stay in the hospital explained the greatest amount of variation in willingness to donate (1.3%), followed by concerns about the time it takes to get to the transplant center (1.0%), out-of-pocket expenses (0.8%), size and appearance of the scar (0.7%), the risk of the donor developing kidney failure in the future (0.7%), and the risk of complications (0.6%). Concerns about financially compensated and uncompensated time from work, availability of friends or family to help during the recovery period, and time requiring pain medications all accounted for less than 0.5% of the variation in willingness to become a live donor. 190

%

p 0.06

79 168

57 71

50 199

53 70

29 220

52 68

52 197

53 71

142 106

61 73

151 98

65 67

0.05

0.1

⬍ 0.01

⬍ 0.01

0.9

Discussion This study of a population-based random sample shows that several considerations influence people’s willingness to donate a kidney to a relative. These include the length of hospital stay, the amount of time it takes to get to a transplant center, the potential risk of kidney failure to the donor, the out-of-pocket expenses, the size and appearance of a surgical scar, and the risk of recipient graft failure. Additionally, through systematic ascertainment, we have identified acceptable levels of these factors above which persons would not feel comfortable donating a kidney. Potential donors’ concerns related to the surgical procedure and recovery following live kidney donation may not reflect knowledge about new advances in transplantation (24–26). For example, both the open and the newer laparoscopic nephrectomy procedures may address many of the donor concerns elicited in this study. Although little data have been published regarding the long-term safety of the laparoscopic donor procedure, short-term evidence comparing these two procedures demonstrates that both procedures provide lower risk of major and minor complications (2–14% for laparoscopic vs. 2–35% for open), lower length of stay (2–3 d for laparoscopic vs. 4–6 d for open), shorter time away from work and daily activities (2–4 weeks for laparoscopic vs. 6– 7 weeks for open), fewer out-of-pocket expenses ($500– 800 for laparoscopic vs. $2000–2600 for open), fewer donor requirements for narcotic analgesics (3–4 d for laparoscopic vs. 12–14 d for open), and less scarring (5–7 cm incision for laparoscopic vs. 15–20 cm for open) for donors than median acceptable values assigned by the majority of our survey respondents (8, '27–31). For respondents who were less than extremely willing to donate in our study, meAmerican Journal of Transplantation 2002; 2: 186–193

Disincentives to Live Donation

dian acceptable values for length of scar and length of stay were lower than average values reported for open nephrectomy in the literature. To date, promising data suggest that the laparoscopic procedure may address these concerns (17, 27–29).

Figure 1: Adjusted relative odds of being extremely willing to donate a kidney to a sibling if respondents rate concerns as very or extremely important. The relative odds are adjusted for race, gender, age, and presence of co-morbid conditions. Odds ratios are shown as point estimates (O) with their accompanying 95% confidence intervals (––). They compare the odds of being extremely willing to donate a kidney to a sibling among persons considering the concern very or extremely important with the odds of being extremely willing to donate a kidney to a sibling among persons who do not consider the concern very or extremely important. An odds ratio of less than 1 indicates that respondents considering the concern very or extremely important are less willing to donate a kidney to a sibling when compared with those not considering the listed concern very or extremely important. Estimates in which the point estimate and 95% confidence interval do not cross 1 represent statistically significant values at a level of p⬍0.05.

That respondents are willing to accept higher levels of both donor complication risk and recipient graft failure risk than that which realistically occurs in clinical settings has important implications for recruitment of future donors. Firstly, without knowledge of the current surgical techniques, many people may overestimate the potential risk of complications after surgery, and they may not donate based on unrealistic fears regarding the donation process. Secondly, results suggest that the overwhelming majority of the public is not particularly concerned about the risk of recipient graft failure, and that most people would tolerate a level of recipient kidney failure over five to six times higher than that which actually occurs for both laparoscopic and open nephrectomy procedures (6–9 and 5–7% 1-year graft failure for laparoscopic and open nephrectomy, respectively) (3, 32). Thus, offering live kidney donation as an important option for patients and their families more frequently, while emphasizing the low risk of complications to the donor and highlighting the likelihood that recipients will have positive clinical outcomes, may improve rates of donation considerably. This premise is supported by a small, single-center study in which rates of live kidney donation have been noted to increase with the implementation of laparoscopic nephrectomy in conjunction with a formal donor education program (33, 34). Nonetheless, live kidney donation represents a unique clinical scenario that presents important ethical considerations (35). While persons in the general public who are not faced with the decision to donate (as in our survey) may be willing to donate at higher levels of risk than occur in reality, those who are faced with the real prospect of donating to a loved one may wish to donate ‘at any cost’, without regard to concrete risks of undergoing an elective procedure. Clinicians should be cautiously aware of the potential for family members to minimize consequences of personal risk while educating them regarding the

Table 3: Threshold values for different concerns regarding surgery above which persons would not be willing to donate a kidney Concern

Range offered

Median threshold Extremely willing

Risk of complications Length of hospital stay Financially compensated time away from work Financially uncompensated time away from work Time requiring prescription pain medications Out-of-pocket expenses Size and appearance of scar Time to get to transplant center

Less than extremely willing

pa

⬍ 5% to ⬎ 30% ⬍ 1 d to ⬎ 8 d ⬍ 0.5 months to ⬎ 3 months

30 ⬎8 3

20 8 2

⬍ 0.001 ⬍ 0.001 ⬍ 0.001

⬍ 0.5 months to ⬎ 3 months

2

1

⬍ 0.001

⬍ 0.5 week to ⬎ 4 weeks

4

3

⬍ 0.001

⬎ 5000 ⬎ 12 ⬎7

3500 12 ⬎7

⬍ 0.001 0.2 ⬍ 0.001

⬍ $500 to ⬎ $5000 ⬍ 1" to [gt] 12" ⬍ 0.5 h to ⬎ 7 h

a

Mann–Whitney U-test.


191

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process and risks of donation. Studies in other areas of health care suggest that education about clinical risk may adjust patients’ previously held misperceptions regarding their own clinical risk and may subsequently alter their decision-making (36–38). The importance of donor education and informed consent are strongly supported by the Live Organ Donor Consensus Group and others concerned with ethical issues regarding live donor recruitment (11, 35, 39). Our results suggest that length of hospital stay, out-of-pocket expenses, potential scarring, risk of potential kidney failure for the donor in subsequent years, and risk of immediate complications from the procedure are concerns that are of foremost importance in the eyes of potential donors, and that educational efforts should focus on these areas. The limitations of this analysis are important to bear in mind. Because we sampled only people living in selected areas of one state, our results may not be generalizable to other segments of the US population. In addition, our population contained a substantial proportion of women and Blacks, which may bias our results in identifying concerns that may be more likely to apply to these demographic groups. Notwithstanding this limitation, the diversity contained within our sample reflects that of a large metropolitan area and has allowed us to examine several important clinical variables and their relation to willingness to become a live donor. Furthermore, the US end-stage renal disease population is over-represented by minorities, and minorities have been shown to be less likely to donate. Thus, our study may help shed light on concerns potential donors from largely minority populations may have. Second, the a priori aim of our study was to identify concerns the general public might have regarding living related donation prior to their having contact with health care professionals who might begin the education and evaluation process regarding suitability for donation. As such, 44% of respondents we included in our analysis identified themselves as having at least one co-morbid condition, some of which might be considered contraindications to donation in a clinical setting (e.g. diabetes or hypertension). While including these persons in our analysis may not have solely targeted concerns specific to ‘ideal’ donors, our results may reflect more realistically the concerns of persons in the general public before they are faced with a clinical evaluation to determine donor eligibility. Nevertheless, when we eliminated these persons from our analysis, results remained robust, indicating a low likelihood of bias from including these persons. Third, we asked persons about their willingness to donate a kidney in the absence of ‘real-life’ pressures related to the decision of whether to donate. Little evidence exists to correlate hypothetical willingness to donate with ‘real’ willingness to donate. It is possible that persons who are less willing to donate in a hypothetical situation may be more willing to donate in a ‘real life’ situation, where they are likely to be directly influenced by the experience of their own family members with kidney failure. Further, the cross-sectional assessment of willingness to donate may only be a proxy for a person 192

actually donating if asked by a family member. However, work by DeJong et al. (40) indicates that beliefs and attitudes regarding cadaveric organ donation correlate with actual donation rates. Additionally, assessing the public’s attitudes prior to their facing the real circumstance of being asked to consider donation by a family member may more accurately reflect preconceived ideas that could move persons to donate prior to discussion with a health care professional (41–43). Finally, we caution readers against the interpretation that concerns about clinical risk are the sole factors influencing willingness to become a live kidney donor. Although our findings demonstrate that many of these concerns are strongly and independently associated with willingness to donate, we found that they explained only 6% of the total variation in willingness to donate in our multivariate models. This suggests that there are likely a variety of other factors which might influence willingness to become a live donor, which may include altruistic attitudes and the quality of the relationship between the potential donor and the family member in need of a kidney (44, 45). In summary, this study identifies concerns of the general public regarding live organ donation. Interventions focusing on these clinical considerations related to donor willingness could advance efforts to optimize informed consent and recruitment of additional donors.

Acknowledgments Supported by a mini-grant from the National Kidney Foundation of Maryland, National Research Service Award .2T32PE10025 Health Resources and Services Administration (LEB), Robert Wood Johnson Clinical Scholars Program (JAS), and grant .K240502643 from National Institute of Diabetes and Digestive and Kidney Diseases (NRP).

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28. 29.

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