Potential living kidney donors’ health education use and comfort with donation
Waterman, Amy D
Context-Much living kidney donation research focuses on actual donors rather than all donors who are evaluated by the transplant center.
Objective-To determine (1) what concerns and benefits potential donors saw possible from donation, (2) how they educated themselves before contacting the transplant center, and (3) who were the most comfortable donors.
Design-A telephone survey of 91 potential donors before transplant evaluation.
Setting-Barnes-Jewish Hospital Transplant Center in St Louis, Mo.
Main Outcome Measures-Willingness and comfort donating, key concerns and perceived benefits to donation, hours of transplant-related education.
Results-On a 7-point scale, potential donors were very willing (mean = 6.65, SD = 0.95) and comfortable (mean = 6.31, SD= 1.12) donating. They were most concerned that their recipients would die if they could not donate, the evaluation and surgery would be anxiety provoking or painful, and they did not understand what donation would require. Donors previously spent an average of 6 hours reading health resources and 32 hours discussing donation. Using logistic regression, those donors with O to 4 concerns (odds ratio = 7.1, 95% confidence interval [CI], 2.2-23.16), more than 5 benefits (odds ratio = 3.7, 95% CI, 1.2-11.0), and who were family members (odds ratio = 4.7, 95% CI, 1.4-15.8) were more likely to be extremely comfortable donating compared to others.
Conclusions-Before evaluation, most potential donors are willing to donate because they think that it is important to improve the health of a loved one. Their knowledge of donation varies and they need clear information about medical testing and support coping with any negative donation outcomes. (Progress in Transplantation. 2004; 14:233-240)
Compared with cadaveric transplantation, living kidney donation is less expensive,1 occurs more quickly,2 results in better graft survival, has lower rates of acute rejection, and has better long-term functioning.2-4 In July 2002, the rate of living kidney and liver donations surpassed cadaveric donation rates. Reasons for this increase include the recent availability of less intrusive surgical procedures like laparoscopic nephrectomies4,5 or mininephrectomies6; the use of unrelated,7-9 older,10 or other marginal donors11; and improved living donor education programs in transplant centers.2,4,12
As the number of potential living donors who are evaluated by transplant centers rapidly expands, understanding living donors’ motivations and decision making becomes more important. Although a considerable body of living donor research is available,13-15 much of it is conducted after transplantation.16-19 Studies with actual donors reveal that, although more than 90% of actual donors would make the same decision to donate again,16,20,21 donors do have concerns about donation-related issues. Published levels of donor concern about surgical pain; length of recovery; concerns about childcare and work responsibilities5,22; health risks to the donor, including perioperative risks like wound infection or hypertension2,20,23,24; and stress and anxiety about the pain and recovery of their donation experience21 are probably higher for potential donors who never came forward or who have just begun the evaluation process.22,25
Understanding who potential donors are may help increase donation rates, as seen in cadaveric organ procurement.26,27 Because most willing cadaveric donors have been shown to be better informed about organ donation, to have discussed donation more often with family members, and to know more people who had signed donor cards,28 we have been able to design media campaigns and health interventions to target these individuals. Cadaveric donation research has assisted organ requestors in understanding how best to request organs from grieving family members10,29; significantly increasing high school students’ knowledge, attitudes, and intention to discuss cadaveric donation with their families and friends30; and increasing minority donation rates.31,32
Education provided by transplant centers or nonprofit transplant organizations may be an important way to reduce potential donors’ concerns about and interest in transplantation. Educational interventions with living donors have had some success33,34; however, it is unclear how commonly prospective donors review educational resources before they contact the transplant center to be evaluated.
To better understand potential donors’ attitudes and use of health education, we conducted a prospective study of 91 potential living kidney donors who volunteered to be evaluated at Barnes-Jewish Transplant Center (BJTC) and Washington University School of Medicine (WUSM) in St Louis, Mo, during a 6-month period. We surveyed potential living donors immediately after they contacted the transplant center to be evaluated to (1) assess their greatest concerns about donation and the ways in which they were most likely to benefit from the donation, (2) assess their use of health education resources before contacting the transplant center, and (3) develop a predictive model on the basis of donor characteristics and prior transplant education use to determine the most willing and comfortable potential living donors.
The kidney transplant program at WUSM and BJTC began in 1963, and 2000 kidneys have been transplanted since its inception. In 2001, 512 patients were referred for kidney transplants and 135 kidney transplantations were performed, 59 of these from living donors.
To be evaluated as potential living donors, family and friends of a specific recipient contacted BJTC by telephone to be logged into the Organ Transplant Tracking Record patient database. Before surveying potential donors, we obtained oral consent from their recipients because of the slight risk that study participation could result in donors becoming less willing to donate. Once a recipient gave permission, we contacted their donors to ask if each was willing to participate in the study. Of 113 potential donors being evaluated for the 50 recipients, 91 (49 women, 42 men) agreed to participate in the study, 6 declined study participation, and 16 could not be reached (81% donor response rate). The age, race, and gender of the 22 potential donors who did not participate in the study were not significantly different compared with the study participants. However, compared to study respondents, nonrespondents were more likely to be extended family members or friends of the recipient versus immediate family members (39% vs 12%, χ^sup 2^=11.01, P=.004).
Potential donors ranged in age from 18 to 70 years (mean = 39.4, SD= 12.96; Table 1). Donors were predominately white (81%) and African American (13%). Most donors were married (67%) and their level of education varied from having a high school diploma (31%), some college education (35%), to a college degree (29%). Donors received no compensation for their study participation.
We conducted a prospective study surveying potential kidney donors 2 weeks after they first contacted the transplant center to be evaluated. Recipients were only contacted to obtain permission to speak with their donors, and were not interviewed as part of the study. When a potential donor consented, each interviewer conducted a 20-minute computer-administered telephone interview. Interviewers were instructed to attempt contact by telephone on 3 separate occasions before dropping the recipient or his or her potential donor from the study. WUSM’s institutional review board approved the study.
Questionnaire Overview. We developed the potential living donor questionnaire by identifying important aspects of the living organ donation experience through past donor interviews, literature reviews, reviews of prior surveys, consultation with experts in organ donation research, and through our previous research studies.16 We reported the psychometric properties of the questionnaire in a previous study.35 The questionnaire, which included 59 questions, measured 5 factors known to play important roles in the organ donation experience: (1) the demographic characteristics of the donor, (2) the donor’s spirituality, (3) what potential benefits the donor believes are possible from donation, (4) fears and concerns of the donor before donation, and (5) the donor’s willingness and comfort donating. Multiple items assessed each factor. Basic demographic characteristics measured included gender, ethnicity, economic status, and biological relationship with the recipient.
Spirituality. We measured spirituality by assessing participants’ spirituality using a Likert scale ranging from “not spiritual at all” (1) to “very spiritual” (7). We also asked a yes/no question, “Do you belong to a specific denomination?” and, if so, whether they thought their religion supported organ donation.
Relationship to the Donor. Potential donors rated their overall closeness with the recipient on a scale from 1 to 7, indicating they were “not close” (1) to “extremely close” (7) to the recipient. We also asked donors what their biological relationship was with the recipient (ie, parent, sibling, child, spouse, friend).
Predonation Issues. We assessed whether potential donors had concerns about 25 donation-related issues and what possible benefits they expected to receive from donation. These concerns and possible benefits were identified through focus groups with donors and have been successfully pilot tested in our past research. Examples of donation issues included, “Do you have the concern that the recipient will pressure you or be angry or upset if you do not donate?” and “Do you have the concern that you will be anxious before undergoing the medical test or the actual donation?”
Responses for the concerns section of the questionnaire were rated on a 4-point scale with the endpoints, “not at all,” “slightly,” “moderately,” and “highly concerned.” The 7 benefit questions (eg, “If you donated your kidney, how likely is it that you would feel better about yourself?”) asked donors to rate which benefits would most likely come true on a scale with the following response options: “very likely,” “somewhat likely,” “somewhat unlikely,” and “very unlikely.”
Finally, we asked 2 questions to assess donors’ readiness to donate. The first question asked donors to rate their willingness to donate if they were a match today on a scale ranging from “definitely would not donate your kidney” (1) to “definitely would donate your kidney” (7). On a l-to-7 scale with similar endpoints, the second question asked how comfortable the potential donor was today being the actual donor for the recipient.
Data were analyzed using the statistical program, SPSS (11.0, SPSS Inc, Chicago, 111). We first calculated basic descriptive statistics, including means, and proportions to examine donors’ demographic characteristics, level of concerns and potential benefits, and prior experience with health education. Because of their highly skewed distributions, we divided the variables, donor willingness and comfort, into 2 groups: potential donors who reported they “definitely would donate” or were “very comfortable” (rated 7) and donors who reported any other level of willingness and comfort (rated 1-6).
We used χ^sup 2^ tests of independence and multiple logistic regression to build a model in which donor concerns and characteristics were individually and jointly associated with high comfort and willingness to donate. Predictor variables examined using univariate analyses included gender, age, race, marital status, education level, spirituality, donor health, relationship to the recipient, donor concerns, perceived benefits, and number of preevaluation hours of education and discussion. For each outcome variable, we initially examined each predictor individually to identify significant simple associations. We then used the pool of candidate predictors that were individually significant to build 2 multivariable models of each outcome, one using forward selection with a P value of .05 for inclusion, the other using backward selection with a P value of .05 for removal. To avoid possible collinearity in the multivariable models, when multiple individual measures of a single factor were significantly associated with the outcome (eg, for relationship, closeness, type, and years known were all associated with high willingness), we selected the one predictor with the largest likelihood ratio χ^sup 2^ to represent the group. The sets of candidate predictors identified by both modeling approaches were included in the final models.
Potential Donor Profile
Each recipient had between 1 and 6 potential donors who called the transplant center to be evaluated (mean = 2.3, SD =1.73, median=1). Potential donors were immediate family members (61%), friends and acquaintances (28%), or extended family members (12%; Table 1). Sixty percent of the potential donors were biologically related to the recipient.
Potential donors reported being very close to the recipients; on a mean scale with 1 indicating “not very close at all” and 7 indicating “extremely close,” donors reported a mean closeness of 5.75 (SD=1.45). Many donors reported spending time weekly with the recipient (53%), whereas others saw the recipient monthly (22%) or only several times a year (25%).
Donors reported an average level of spirituality; on a 1 -to-7 scale, with 1 indicating “not spiritual at all” and 7 indicating “extremely spiritual,” donors’ reported mean spirituality was 5.09 (SD=1.58). Sixty-eight percent of donors also belonged to a specific religious denomination, although interestingly, of those who belonged to a religious denomination, only 33% knew that their religious denomination definitely supported organ donation.
Donor Concerns and Benefits Preevaluation
Of the 25 donation-related issues, on average, donors reported being moderately or very concerned about 3.95 issues (SD=3.82). For all 25 issues rated by the donors, we summed the level of concern, ranging from “not at all concerned” (1) to “highly concerned” (4) and created a single average concern variable. Before evaluation, the average level of donation concern across topics was 1.56 (SD=0.38), indicating that potential donors were only slightly concerned about issues related to donating their kidneys.
In examining specific concerns of potential donors, we found that more than 20% of potential donors reported being “moderately or very concerned” about 8 specific issues (Table 2). Before evaluation, potential donors were most concerned that their recipients would die if they did not donate (53.8%). They also had personal concerns about their own donation surgery and recovery; specifically, they reported being anxious about the tests and surgery (37.4%), concerned about the pain involved (29.7%), and concerned about the length of their recovery (23.1%). Outcomes of the test results and the transplantation were also important: a significant proportion of donors would be upset if they were not a match (25.3%), whereas others would be disappointed or guilty if their kidney was rejected (37.4%). Finally, potential donors reported a lack of understanding about the testing and surgical procedures (23.1%) and concern about out-of-pocket expenses from testing and donating (23.1 %).
Besides their concerns, a significant percentage of potential donors reported that it was “somewhat” or “very likely” that potential benefits would occur from donating their kidneys. For benefits rated by the donors, we created an average benefits score by summing the rating on each the 7 benefits and averaging them. Before evaluation, the average level of perceived benefit was 1.68 (SD=0.46), indicating that potential donors thought that it was somewhat likely they would benefit from donating their kidneys. All potential donors also reported that they thought that it was somewhat or very likely that the recipients’ health would be improved (100%) and that they would have accomplished something important (100%). At least 80% of donors thought that it was somewhat or very likely that they would feel better about themselves after donating (86.7%), or be closer with the recipient (82.2%) or their family (80.9%) after donation. Finally, almost half of the potential donors (47.1 %) thought that donation would enhance their standing in the family.
Preevaluation Use of Educational Resources
We assessed what type of health education and conversations potential living donors had about donation before contacting the transplant center. Donors had conversations about donation more commonly than reading educational information; on average, donors discussed donation for 32 hours and only read health information for 6 hours (Table 3). Before they were evaluated, they discussed donation most often with their immediate family (12 hours) and their recipients (9 hours). They also spent, on average, 3 hours reviewing health literature and 1 hour using Internet resources. Finally, the range of hours donors spent educating themselves before calling the transplant center varied widely; some donors read health education for up to 80 hours and spoke with recipients and family members for up to 100 hours, whereas others spent no time educating themselves at all.
We also assessed whether reviewing health education or talking to either transplant center staff or a living donor before being evaluated was associated with how comfortable a donor was considering transplantation. Because people varied widely in their utilization of different health education resources, we created a dichotomous variable indicating “use” or “no use” of each educational source. The χ^sup 2^ test showed that 79% of potential donors who used the Internet to research living donation were very comfortable pursuing living donation, compared with 58% of donors who did not conduct Internet research (χ^sup 2^ = 3.91, P=.05). No other type of education use, including reviewing health literature, books, videos, or talking with transplant center staff or a living donor, was significantly associated with high comfort in donating.
In examining who the Internet users were, we found that immediate and extended family members were more likely to use the Internet than friends or acquaintances (39% vs 12%, respectively; χ^sup 2^ = 6.27, P = .01.) There were no other significant differences between donors who were family members or friends in their use of any other types of health education.
Potential Donors’ Preevaluation Experience and Attitudes
Two weeks after contacting the transplant center, potential donors were already very committed and willing to donate. On the question, “If you were a biological match and you had to decide if you would be the donor today, would you agree to donate your kidney?” donors reported an average willingness to donate of 6.65 (SD = 0.95) on a 7-point scale with 7 indicating highest willingness. For the question, “How comfortable are you today with the possibility of donating your kidney?” using a l-to-7 scale with 7 indicating “very comfortable,” donors reported a comfort level of 6.31 (SD=1.12).
Simple χ^sup 2^ analyses for willingness also identified that people with 0 to 4 concerns were more willing to donate than people with more than 4 concerns (90.2% vs 63.3%, χ^sup 2^ = 9.53, P=.002); people who saw more than 5 benefits for donating were more willing than people who saw fewer than 5 benefits (90.2% vs 63.3%, χ^sup 2^ = 9.53, P=.002); and family members were more willing than friends or acquaintances (89.1 % vs 69.4%, χ^sup 2^ = 5.53, P =.02). In the χ^sup 2^ analyses, Internet use was not significantly associated with willingness. We were unable to validly fit a multiple regression model for willingness given that all but 7 people chose the highest value on the scale.
The final logistic regression model for comfort included 4 predictor variables: number of concerns (0-1, 2-4, greater than 5), level of perceived benefits (0-4, greater than 5), relationship to recipient (family member or friend/acquaintance), and previous Internet use (yes/no). Donors with 0 to 4 concerns (odds ratio [OR] = 7.1, 95% confidence interval [CI] = 2.2-23.16) were more likely to be extremely comfortable donating compared with people with 5 or more concerns. Those who saw 5 or more benefits (OR = 3.7, 95% CI = 1.2-11.0) and family members (OR = 4.7, 95% CI = 1.4-15.8) also were more likely to be extremely comfortable donating compared with people who saw fewer benefits or who were friends of the recipient. Internet use, which was significant in univariate analyses, was not significant in the model, but had an elevated odds ratio (OR = 2.6, 95% CI = 0.8-8.4).
This prospective study of potential kidney donors determined who the most willing and comfortable potential living kidney donors were at the beginning of the donor evaluation process. We found that the majority of potential donors were ready to donate and comfortable donating from the first moment they called the transplant center to be evaluated, a finding consistent with earlier research.14 Calling the transplant center indicates that donors have resolved their main issues about donation and are ready to be actual donors. In exploring why they were so willing, almost 100% of donors revealed that they were volunteering to improve the recipients’ health and because they would be doing something important. Potential donors’ hope that benefits would come from their donation seem well-founded; research on actual donors has shown that donors report enhanced self-esteem, happiness, life satisfaction,21-36 and improved relationship with the donor25 after their donation.
The most comfortable donors were family members of the recipient, and those donors who had few concerns about donation and saw the positive value in donating. Higher levels of concern may lead to donation ambivalence, a variable shown to be a significant predictor of negative postdonation outcomes.14,37 Donors’ greatest concern was about the declining health of the recipient. Many donors indicated that they would be very upset if the test results revealed that they would not be able to donate to their recipient or if the transplanted kidney failed. A significant proportion of potential donors also expressed fear and lack of understanding about the medical procedures they might be undergoing. Concerns that potential donors may feel pressured to donate18-40 were unfounded; fewer than 3% of all potential donors felt pressured by either the recipient or transplant staff to donate, and only 5% were concerned that they could not back out if they wanted to do so.
Addressing donors’ main concerns in transplant center meetings, through printed education, or on the Internet is important, especially if this education can be made available to donors who have not yet come forward to be evaluated. Potential donors who are still grappling with their decision whether to be evaluated need easy access to quality Internet donor resources or printed information. Many potential donors in this study, most commonly family members, read health education and researched transplantation on the Internet before being evaluated. On the basis of this study’s findings, we wrote a 36-page psychosocial brochure, “The Living Gift,” addressing the main concerns of donors and potential benefits of donation. This brochure includes quotations by actual donors about common questions and provides helpful print and Internet resources. The brochure is available from the Missouri Kidney Program (http://www.hsc.missouri .edu/~mokp).
The relationship between Internet use and comfort donating was an interesting finding that needs further study using a larger sample. This study could not determine whether conducting Internet research about transplantation led people to become more comfortable or if more comfortable people sought out the Internet. It is also unclear why family members were more likely than friends to use the Internet. It may be that family members knew about the recipients’ illness earlier and used the Internet to learn more about it. Certainly, with Internet education being the second most common way of learning about transplantation before contacting the transplant center, its influence on donor comfort must be understood. Overall, the Internet should be fully utilized by transplant centers to provide potential donors with transplantation information and easy access to actual living donors using donor message boards.
Because potential donors reported that they spent more time talking to the recipient and their immediate family than reading educational materials, education for recipients about living donation is also important. Recipients may feel more comfortable asking their friends and family to consider donating if they know answers to common donor questions or why potential donors perceive living donation to be beneficial. In addition, while speaking with the donors, recipients could disseminate printed information about living donation to potential donors who might not call the transplant center to obtain it.
This study had several limitations. First, because both the recipient and donor had to consent for the donor to participate in the study, recipients who were uneasy about donation could decline to let us contact their donors. Recipients could be uneasy for several reasons that could bias the results of this study. Specifically, they could have fewer potential donors, be less close with their potential donors, or have donors who were less comfortable donating. Similarly, potential donors who are uneasy about donating may also decline to participate in the study. It is possible that donors’ high mean willingness to donate and comfort could be due to an enrollment bias where the donors most willing to donate are also those most willing to participate in a research study. In addition, donors who participated were most often immediate family, versus friends or extended family members, and therefore may have been more comfortable donating. Although we found no age, gender, or education level differences between the donors who declined and donors who participated from the 50 recipients we studied, additional research is needed to explore which recipients declined to let their donors participate, which donors declined, and why.
Another important group of people to study in future research are family members and friends who do not volunteer to be evaluated. Previous research has shown that nondonors are more likely to be older, less educated, siblings of the recipient or elderly parents, and living farther away.14 In order to understand what concerns nondonors have, future research should explore why people do not volunteer to be evaluated, if this is ethically possible. If not, exploration of what personality characteristics predict low willingness, for example, introverts, people low in altruism, or people with high mistrust of the health system,41 could also be valuable. Finally, the low number of African Americans and other living donors who are members of a minority group-only 16% in our sample-is also of concern. Additional research needs to be conducted to understand the unique issues of potential living donors from minority groups.
In summary, potential donors who called the transplant center to be evaluated were found to be immediately willing to donate because they thought it was important to improve the health of a loved one. They varied in their knowledge about transplantation, had some concerns, and needed clear information about the medical testing and procedures. Some potential donors also would need support if they were ruled out as donors or if their donated kidneys were rejected. By better meeting the needs of potential donors and others who have not yet come forward through education and open discussion, more individuals may be evaluated as donors and more transplants may occur.
The Missouri Kidney Program and the International Transplant Nurses Society provided funding for this study. Dr. Schnitzler receives funding from a K25 award from the National Institute of Diabetes, Digestive Disorders, and Kidney Disease (1K25DK02916-02).
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Amy D. Waterman, PhD, Tonie Covelli, MPH, Laura Caisley, MPH, Wendy Zerega, MHA, Mark Schnitzler, PhD, David Adams, PhD, Barry A. Hong, PhD
Washington University School of Medicine, St Louis, Mo (ADW, TC, WZ, MS, BAH), School of Public Health, Saint Louis University, St. Louis, Mo (LC), Waterman Research Solutions, St Louis, Mo (DA)
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