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Keywords:

  • Donor screening;
  • living liver donors;
  • psychological characteristics of donors

Abstract

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

The motives and decision making of potential living liver donors are critical areas for transplant clinicians evaluating these candidates to understand, yet these topics remain relatively unstudied. Thus, we surveyed 77 prospective living liver donors at the point of donation evaluation using structured instruments to gather more information on their approach to and concerns about donation. We collected information on donation decision making, motives for donation and anticipated social and physical concerns about postdonation outcomes. We examined three additional characteristics of donors: gender, the relationship of the donor to the intended recipient and the presence of ambivalence about donation. Women had more concerns about their family/social responsibilities. Those donating to nonimmediate family were more likely to have been asked to donate but less likely to feel they had to donate. However, ambivalent donors were the most distinct having difficulties and concerns across most areas from their motivations for donating, to deciding to be tested and to donate, to concerns about the postdonation outcomes. We discuss the clinical relevance of these findings to donor evaluation and preparation.

Abbreviations: 
SD

standard deviation

US

United States

Psychosocial evaluation of living liver donors is a routine part of transplant programs’ clinical protocols. Information obtained from these assessments informs the team about the individual's psychological well being, whether they have carefully considered the donation, are free from coercion or significant ambivalence, and determines their understanding of the donation process. From these psychosocial assessments several characteristics are consistently reported. Donors tend to be a highly motivated and altruistic. They are most often biologically or emotionally related to the intended recipient and describe a desire to help others as their primary motivation. Many have already volunteered in significant ways either through donating blood products, volunteering their time and money or already having signed an organ donor card (1,2).

Despite some basic similarities donor candidates can differ considerably in their approaches to donation. In one study of gender differences, women more often reported being motivated by love, while men were more deliberate in their considerations weighing the pros and cons (3). While many donors make the decision quickly, report no significant doubts and do not feel they will change their minds even after the evaluation (1,4,5), some require time to consider their decision and may express ambivalence (4). Some report a willingness to take a high degree of risk for the recipient, especially parents and spouses (1,5). Such differences may reflect specific decision-making strategies (4).

Thus initial reports of donor characteristics and qualities reveal important differences among liver donors that could impact their approaches to and expectations of donation and ultimately their experience of their postdonation outcome. Further understanding of potential donor characteristics will aid transplant teams in identifying those more likely to express concerns, wrestle with their decision making, or express ambivalence. Such information will allow the transplant team to examine potential donors more carefully to anticipate their needs, prepare them for donation, and support them during the recovery period. We have collected detailed information on liver donors at our transplant center during our donor evaluation phase using specific structured instruments on areas including motivation, decision making and concerns over donation to examine associations between donor characteristics and their approaches to and expectations of the donation.

Based on findings from prior studies we decided to examine three specific characteristics of living liver donors: gender, the relationship of the donor to the intended recipient and the presence of ambivalence about the donation. We then considered whether these characteristics were associated with donors’ motives for donation, their decision making about the donation and their anticipated social and physical concerns about postdonation outcomes.

Methods

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

During the period of enrollment 131 potential donors were evaluated at the Thomas E. Starzl Transplant Institute. Of the donor candidates 15 learned that they were medically ineligible, one was deemed mentally ineligible and 10 did not go on to donate (mostly recipient reasons). As our questionnaires presume that the respondent is anticipating possible donation, to know one is ineligible or not proceeding to donation makes many questions unanswerable. Therefore, these 26 potential donors were not eligible for our study. Of the remaining 105 donor candidates, four were missed and two refused to participate. Ninety-nine donor candidates were consented using IRB approved procedures. Of those, 77 participants completed our questionnaires at the time of their evaluation representing 73% of eligible donors.

Donors were consented as early as possible in the evaluation process to allow questionnaire completion before possible ineligibly determination, however to respect the needs of donors in a busy evaluation process they were allowed to complete them at their convenience during the evaluation week. Questionnaires are self-administered requiring approximately 45 minutes. Respondents were instructed to complete it in private in one sitting. Donors were told their responses were completely confidential, would not be revealed to any transplant team member or included in their medical record and had no bearing on their donation evaluation.

Our donor protocol involves first telephone screening with basic review of donation testing and surgical procedures prior to arrival at the clinic. In advance of their first clinic appointment all donors received a detailed packet of information about donation including educational materials and our full informed consent form.

During their evaluation they were first seen by the donor coordinator who reviewed the procedures of the evaluation process. All donors are seen by our surgery, hepatology, transplant psychiatry and social work services as well as undergoing laboratory, biopsy and radiological testing as indicated. The ordering of the interviews, examinations and questionnaire completion was variable.

Donation specific instruments

From her seminal work in kidney donors Dr. Roberta Simmons created and validated several key instruments to assess donation specific decision making, motives for donation and expectations of donation specific experiences and concerns (6). The measures are used extensively in bone marrow (7–10) and kidney (11,12) donation. We chose these instruments to assess our donor's experiences about the predonation process (see Appendix for specific instruments).

Ambivalence scale

The seven-item ambivalence scale asked potential donors questions such as, “Would you want to donate even if someone else could?”, and “If you could not donate would you feel relieved?” Items responses are dichotomized to reflect whether participants expressed any (1) or no ambivalence (0) and summed to form an overall ambivalence score from 0 to 7. Higher scores reflect greater ambivalence. Cronbach's alpha was 0.83 indicating high internal consistency.

Deciding to donate

This measure includes items about decision making to become a potential donor such as how they first learned about donation, if there were other possible donors, how quickly they made the decision, whether anyone encouraged/discouraged them from donating and whether they felt they had to donate. Items were dichotomous yes/no answers or scaled items ranging from positive to negative answers (e.g. immediately decided to postponed the decision).

Concerns about donation

Ten individual items assessed donation related concerns about medical issues and psychosocial issues (see Appendix). All items were scored as endorsed “yes concerned” or “no not concerned”. Four additional questions were asked about whether donors had specific concerns about the effects of donation on their health (scored as agree or disagree) and how often they had these worries (scored from often worry to never worry).

Motives for donation

Respondents were asked to consider their motives for donating across 19 items rated on a Likert scale from not at all true to very true. Ten of the items asked whether participants agreed with the statement that they were “donating because…”. Nine other items asked whether they were anticipating specific positive outcomes from donation.

General instruments

SF-36 health-related quality of life survey:  The SF-36 is a widely used measure of health related quality of life consisting of 36 items, which create 8 domains of quality of life (13). Scaled scores for each domain are the weighted sums of the domain questions with each score transformed into a 0–100 scale, with higher scores indicating better functionality or less pain.

Profile of Mood States:  The Profile of Mood States consists of 65 adjectives that describe various aspects of mood rated on a 5-point Likert scale from 0 (not at all) to 4 (extremely) based on how they were feeling in the prior week. Six factors can be derived from the numeric summation of responses for specific categories of mood symptoms.

Pearlin Mastery Scale

The Mastery Scale has seven items, questioning the degree of control respondents feel they have in their life in general (see Appendix). Statements are answered on a four point Likert scale ranging from 1 “strongly disagree” to 4 “strongly agree”. The scale is the summary of all seven items with total scores, from 7 to 28, with higher scores reflecting higher self mastery.

Rosenberg Self-Esteem Scale

This scale is 10 items answered on a four point Likert scale—from strongly agree to strongly disagree. Respondents are asked a list of statements dealing with general feelings about themselves with respect to their self-image (e.g. feeling proud, successful, worthwhile, satisfied and positive about themselves). Scores can range from 0 to 30 with higher scores reflecting greater self esteem (14).

Demographic information was collected including age, race, marital status, educational level, employment status and relationship to the intended recipient. We additionally asked questions about knowledge of the recovery from donation through questions about their anticipated time in hospital, expected time until they could return to work/household activities and the expected time until they were back to normal.

Statistical analyses

First, we examined descriptive data for all donors using estimates of central tendency (means, medians) and spread (standard deviation, range) for continuous data and frequencies and percentages for categorical data. Measures with scaled scores (e.g. SF36 and POMS) were scored using standard algorithms and presented as the summary variables of the subscales.

For the Simmons’ Ambivalence scale we considered those who had no ambivalence on any item (total score of 0) compared to those with any ambivalence (total score ≥1).

For the deciding to donate measure, due to differences in scaling between items, we dichotomized all items to yes/no answers or to reflect the most immediate decision making versus other. The motivations for donation questions were scored as continuous variables across the Likert scale. For the concerns about donation we created a total number of concerns. Those with three or more concerns about the family/social issues or three or more concerns about medical issues were compared to others.

Based on our a priori hypotheses about specific characteristics of donors we then examined three groupings of donor characteristics: male versus female, immediate family (defined as parent, child, sibling and spouse) versus others and those with any ambivalence (total score ≥1) versus no ambivalence. Comparison between these groups were made between individual items from the measures using cross tabulation procedure with the appropriate test statistic (Pearson Chi Square or Fisher's Exact) for categorical variables or analysis of variance for continuous variables.

Results

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

Cohort demographics

Table 1 shows the demographic characteristics of our cohort. Donors were nearly evenly split between men and women. Most were college educated and worked full time. Most were parents with children at home. Most were adults considering donating to adults and most were being considered for right lobe donation.

Table 1.  Baseline characteristics (n = 77)
Demographics 
Sex (% female)54.5
Age (mean, SD)38.7 ± 10
Race (% white)94.4
Marital Status (% married)62.3
Primarily a homemaker (% No)98.7
Religion 
Protestant29.3
 Catholic41.3
 Jewish 2.7
 Other13.3
 None13.3
Have children (% yes)64.4
Of those (n = 47 with children)… 
Any children at home (% yes)75.6
Number of children (mean ± SD, range)2.28 ± 1.17, 1–6
Age of children (range, years)1–37
Educational level 
HS or less25.0
Some college-bachelor's degree67.5
Post-Bac/Graduate/Professional 7.5
Employment status (% employed full time)84.8
Donation related 
Relation to recipient 
Immediate family (child, parent, spouse, sibling)73.7
Nonimmediate family relationships: 
 Extended family (grand parent, aunt/uncle, grand aunt/uncle, cousin, niece) 9.2
 In-law 3.9
Step (child/parent) 3.9
Friend/Acquaintance 9.2
% Considered for adult-to-adult donation 74
% Considered for right lobe donation 70
Actually donated (% yes) 74

Donors anticipated being in the hospital an average of 8 ± 5 days and, for those who worked, they expected to be back to work in about 6 weeks (47 ± 27 days, 75th percentile 60 days). There was significant range to their beliefs about being fully back to normal although the mean was about 3 months (84 ± 71 days, 75th percentile 120 days with one outlier at 365 days).

With respect to other altruistic acts, 75% gave to charities and 30% provided volunteer work (50% donated 6 h or more/month). Sixty-two percent had already signed their organ donor cards. Nearly 70% had donated blood, 9% had donated plasma and 5% were on the bone marrow registry with two people having already donated bone marrow.

Ambivalence scale

Twenty donors (26%) reported no ambivalence on any item and seven (9%) expressed ambivalence on every item. The mean score was 2.7 ± 2.4. Tables 2 and 3 show the percent positive on each item and distribution of total scores.

Table 2.  Simmon's Ambivalence Scale: for each item % that endorsed ambivalence
Specific questions: 
1. Knew right away that you would donate (% that had to think it over)36
2. How hard the decision was to make (% hard)33
3. How disappointed would you be if you could not donate (% relieved)17
4. Had doubts about donating (% yes)40
5. Would really want to donate even if someone else could (% disagree)23
6. Sometimes I feel unsure about donating (% agree)34
7. Sometimes I wish the recipient was getting a liver from someone else (% agree)41
Table 3.  Distribution of total ambivalence scores
Total number of items positively endorsedNumber of donorsPercent
02026
11114
21013
3 810
4 5 7
5 912
6 7 9
7 7 9

General scales

SF-36 mean scores were high for all domains exceeding US normative data (Ref. 15; Table 4). Participants described their mood states as relatively neutral with little depression, anger, fatigue or confusion and levels were mostly better than US normative data. Anxiety levels were elevated relative to other moods states and slightly higher than US norms but levels were still low. Donors rated themselves highest with respect to vigor and activity. In addition to self-reported strong physical and emotional states, donors reported both a high degree of self-mastery (Pearlin Mastery Scale mean 23 ± 2.8, range 16–28) and self esteem (Rosenberg Self-Esteem Scale mean 25 ± 3.7, compared to US normative scores of 22).

Table 4.  General instruments for all donors
 Potential donorsUS norms1
  1. 1Based on general nonpatient populations.

  2. 2A suggested cut-point between clinical and nonclinical scores is +1.5 standard deviations above the normative data standardization means. US normative data presented as a range for males and females (16).

SF-36 (mean, SD)  
 Physical functioning93, 1784
 General health82, 1572
 Role physical93, 1881
 Role emotional89, 2681
 Social functioning91, 1783
 Vitality68, 1861
 Mental health81, 1375
 Bodily pain87, 1875
POMS (mean, SD)2  
 Tension-anxiety9.8, 6.77.1–8.2
 Depression-dejection4.3, 5.57.5–8.5
 Anger-hostility5.2, 4.67.1–8.0
 Vigor-activity17.3, 5.318.9–19.8
 Fatigue-inertia5.9, 4.87.3–8.7
 Confusion-bewilderment5.1, 3.65.6–5.8

Group differences

The three groupings of donors (gender, relationship and ambivalence) did not differ with respect to any demographic (age, martial status, race or gender) or socioeconomic status (education or employment) or with respect to scores on the SF36 or POMS. The only difference was that men reported being significantly more vital on the SF36 vitality subscale compared to women (74 ± 17 vs. 63 ± 16, F = 9.2, p = 0.003) although the mean scores for women were still above US norms.

Tables 5–7 show the responses of the three groupings across the specific areas of decision making, motivations and concerns. Decision-making and concern items are displayed as the percent who endorse an item followed by the appropriate test statistic. Motives for donation are displayed as continuous variables. For brevity we show 10 of the total 19 items from the motives for donating scale. The remaining items were not significantly different across any group comparisons.

Table 5.  Comparisons between males and females for key instruments
  Male (n = 35)Female (n = 42)Test statistic1
  1. 1χ2 for categorical variables or F-test statistic for continuous variables. For some statistics only the exact p-values are reported because the numbers of cases are small (2-sided Fisher's exact p).

Decision making    
 When decide to be tested (% immediately on learning of need)62560.25, 0.62
 Did you postpone the decision to donate (% yes)9242.7, 0.09
 Definitely decided to donate (% when first learned about disease)3070.013
 Anyone encourage you to donate (% yes)18311.77, 0.18
 Anyone discourage you from donating (% yes)45450, 0.97
 Other possible donor (% no)31554.21, 0.04
 When told of match (% felt had to donate)39164.23, 0.04
Motivations for donation:
“I am donating because”:
 I see myself as someone who helps (mean, SD)5.2, 1.64.9, 1.7ns
 I was raised to believe we should help others (mean, SD)5.4, 1.55.2, 1.6ns
 Helping others makes society better (mean, SD)4.0, 1.94.3, 1.9ns
 Because of religion (mean, SD)2.8, 2.03.8, 2.23.92, 0.05
 I feel obligated (mean, SD)3.7, 2.33.5, 2.1ns
“After donating I anticipate”:    
 My family will express gratitude (mean, SD)7.6, 2.76.7, 2.7ns
 My family will hold me in higher esteem (mean, SD)6.6, 2.85.5, 2.92.83, 0.09
 I will feel good inside (mean, SD)8.8,1.58.7, 1.8ns
 It will relieve the recipients suffering (mean, SD)9.1, 1.39.1, 1.3ns
 I will feel fulfilled (mean, SD)6.9, 2.87.7, 2.1ns
 It will give special meaning to life (mean, SD)6.8, 2.97.7, 2.1ns
 It will help the recipient9.3, 0.99.6, 0.7ns
Concerns about donation    
 Three or more family/social concerns (% yes)23520.01
 Three or more medical concerns (% yes)29480.1 
 Worry donation will have long term effects on health (% agree)920.32
 Worry donation will damage my health (% agree)43401
 Worry about never feeling 100% again (% agree)23260.8 
 Worry about overall effects of donation (% sometimes or often)34550.1 
Table 6.  Comparisons between relationships for key instruments
  Immediate family relationship (n = 56)Other (n = 20)Test statistic1
  1. 1χ2 for categorical variables or F-test statistic for continuous variables. For some statistics only the exact p-values are reported because the numbers of cases are small (2-sided Fisher's exact p).

Decision making    
 When decide to be tested (% immediately on learning of need)58600.02, 0.8
 Did you postpone the decision to donate (% yes)20100.49
 Definitely decided to donate (% when first learned about disease)19150.12, 0.72
 Anyone encourage you to donate (% yes)18403.8, 0.05
 Anyone discourage you from donating (% yes)41602.1, 0.14
 Other possible donor (% no)43470.11, 0.73
 When told of match (% felt had to donate)33 50.02
Motivations for donation:
“I am donating because”:
 I see myself as someone who helps (mean, SD)5.1, 1.54.9, 1.9ns
 I was raised to believe we should help others (mean, SD)5.3, 1.45.2, 1.9ns
 helping others makes society better (mean, SD)4.2, 1.84.0, 2.1ns
 because of religion (mean, SD)3.1, 2.03.8, 2.4ns
 I feel obligated (mean, SD)3.6, 2.13.6, 2.4ns
“After donating I anticipate”:    
 My family will express gratitude (mean, SD)7.3, 2.56.6, 3.4ns
 My family will hold me in higher esteem (mean, SD)6.1, 2.85.7, 3.4ns
 I will feel good inside (mean, SD)8.7, 1.68.8, 1.8ns
 It will relieve the recipients suffering (mean, SD)9.2, 1.08.6, 1.7ns
 I will feel fulfilled (mean, SD)7.1, 2.36.7, 3.1ns
 It will give special meaning to life (mean, SD)7.2, 2.57.2, 2.9ns
 It will help the recipient9.48, 0.89.4, 0.8ns
Concerns about donation    
 Three or more family/social concerns (% yes)43250.19
 Three or more medical concerns (% yes)46150.01
 Worry donation will have long term effects on health (% agree) 7 00.56
 Worry donation will damage my health (% agree)46250.11
 Worry about never feeling 100% again (% agree)30100.08
 Worry about overall effects of donation (% sometimes or often)46400.79
Table 7.  Comparisons between ambivalent and non-ambivalent for key instruments
  Any ambivalence n = 57No ambivalence n = 20Test statistic1
  1. 1χ2 for categorical variables or F-test statistic for continuous variables. For some statistics only the exact p-values are reported because the numbers of cases are small (2-sided Fisher's exact p).

Decision making    
 When decide to be tested (% immediately on learning of need)479011.0, 0.001
 Did you postpone the decision to donate (% yes)24 00.015
 Definitely decided to donate (% when first learned about disease)13303.0, 0.08
 Anyone encourage you to donate (% yes)26210.76
 Anyone discourage you from donating (% yes)53250.03
 Other possible donor (% no)53200.02
 When told of match (% felt had to donate)23290.74
Motivations for donation:
“I am donating because”:
 I see myself as someone who helps (mean, SD)4.9, 1.65.8, 1.45.1, 0.02
 I was raised to believe we should help others (mean, SD)5.1, 1.55.7, 1.5ns
 helping others makes society better (mean, SD)4.0, 1.74.4, 2.2ns
 because of religion (mean, SD)3.4, 2.03.3, 2.5ns
 I feel obligated (mean, SD)2.0, 0.22.5, 0.54.0, 0.04
“After donating I anticipate”:    
 my family will express gratitude (mean, SD)7.4, 2.66.4, 3.0ns
 my family will hold me in higher esteem (mean, SD)6.2, 2.95.6, 3.0ns
 I will feel good inside (mean, SD)8.5, 1.79.5, 1.35.3, 0.02
 it will relieve the recipients suffering (mean, SD)8.9, 1.49.6, 0.94.1, 0.04
 I will feel fulfilled (mean, SD)6.9, 2.37.4, 3.1ns
 it will give special meaning to life (mean, SD)7.3, 2.47.2, 3.0ns
 it will help the recipient9.3, 0.99.8, 0.35.3, 0.02
Concerns about donation    
 Three or more family/social concerns (% yes)47150.01 
 Three or more medical concerns (% yes)4910 0.003
 Worry donation will have long term effects on health (% agree) 7 00.56 
 Worry donation will damage my health (% agree)53100.001
 Worry about never feeling 100% again (% agree)33 00.002
 Worry about overall effects of donation (% sometimes or often)61 00.000

Gender differences

Women took more time than men to deliberate over the decision to donate. This may be due to the fact that women more often reported that there were other possible donors and that they were less likely to feel as if they had to donate when they matched. Women were more likely than men to endorse religion as a motivating factor in their decision. Also women were more likely to express concerns about the impact donation would have on family, caregiving and other social obligations.

Relationship to donor (immediate family vs. others)

Immediate family donors were more likely to feel they had to donate when they were told they matched compared to nonimmediate family. Nonimmediate family donors were more likely to have been encouraged by someone to donate. There was no difference in the motivations to donate between these groups. Interestingly immediate family donors had more concerns about medical issues following donation.

Ambivalent versus nonambivalent

Most donors intended to donate but had some lingering concerns. Only a minority expressed high levels of ambivalence. We chose the threshold of any ambivalence recognizing that such concerns would not only be common among donors (4) but could also influence expectations of their postdonation outcomes. We also wanted to examine differences between those without any ambivalence compared to others. We found no differences between ambivalent and nonambivalent donors with respect to gender, race, martial status, having children, level of education, current employment status, relationship to recipient or intended type of donation (adult-to-adult or right vs. left lobe).

Ambivalent donors delayed at every step in the process from their decision to be tested to postponing their decision to donate. They may likely have been motivated by pressure from the lack of other possible donors while simultaneously being discouraged by others from donating. Of the ambivalent donors, 31% reported being discouraged by the recipient, 28% by their spouses and 35% by their mothers.

With respect to motivating factors, ambivalent donors were less likely to see themselves as someone who helps others and less likely to feel obligated to donate. With respect to positive motivating factors, although the scores for both groups were high overall, ambivalent donors were less likely to anticipate feeling good inside from donating and were less likely to feel motivated by a desire to help the recipient or relieve their suffering.

Most concerning is the ambivalent donors’ expectations about donation. Not only did they worry about the immediate perioperative events (i.e. pain, surgery and recovery) but they worried that donation would have long term and lasting effects on their health. They also had more numbers of concerns with regard not only to medical issues but also family and social issues.

Discussion

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

In comparison to other US citizens, potential living liver donors demonstrate a high degree of volunteerism. Although only 4% of US adults donated blood in the last year (17), nearly 70% of our potential donors had donated blood. In addition, 62% had already signed an organ donor card compared to 37% of all US adults (18). However while most donors appear altruistic some have difficulties considering donation.

There were few differences comparing men and women. Women were more likely to be concerned about the donation's impact on their family and social obligations. This may reflect women's various roles in their families with respect to caregiving responsibilities. In kidney donors, Thiel hypothesized that men's role as the family breadwinner led to fewer men donating (19). The pressures of social and family concerns could result in less willingness to proceed with donation. Some of these issues could be ameliorated with the identification of additional support at home or provisions to assist with work /time off (e.g. assisting with identifying possible family leave provisions at work). We also found that women more than men endorsed religion as a reason for donation. This is consistent with Boulware's work where adjusting for respondents’ beliefs regarding the importance of spirituality and religion explained much of the difference between men and women in willingness to donate organs (20). Still a recent review found little published data on gender issues in living donors and called for further investigations (21).

Between immediate and non-immediate family donors there were similarly few differences. Immediate family donors may have felt pressured to donate when they learned they had matched due to their relationship with the intended recipient.

Nonimmediate family donors were more likely to be asked to donate yet were less likely to feel they had to donate when they matched perhaps because the distance of their relationship made them feel less obligated. Dr. Simmons found relationships between donor–recipient pairs to be critical to a successful, conflict-free decision making process. Family dynamics were less stressful, there was better communication, less pressure for others to donate and more donors volunteered when a parent offered to donate to a child, even an adult child (6).

The presence of ambivalence was worrisome as these donors had concerns and negative feelings across multiple areas, including family, social and medical. They had difficulty with donation decision-making indicated by both delaying the decision to be tested and in making a final decision to donate. They were less likely to anticipate positive emotional rewards from the donation experience and were worried about the lasting negative effects of donation.

It is well established that patients with negative expectations about surgeries/procedures often report negative experiences and negative feelings about the experience afterward (22). In unrelated bone marrow donors predonation ambivalence was strongly associated with poorer postdonation outcomes (8). Bone marrow donors with greater ambivalence predonation reported more physical difficulty with donation and more negative psychological reactions shortly after transplant and continued to be more likely to have negative feelings 1 year after donation (8). In our cohort ambivalent donors anticipate not only problems in the immediate postsurgical period but long term and lasting problems with their health. Interestingly in the bone marrow donor study those who had been discouraged from donating were more likely to be ambivalent (8), an association we found in our liver donors.

While better education and preparation could prevent or alleviate anxieties about the surgery and immediate recovery and early postoperative interventions could lessen pain and discomfort, the identification of significant worries and concerns about donation should be weighed carefully in the decision to allow donors to proceed with donation. As evidence demonstrating the association of high ambivalence to poorer outcomes is strong (6,8) in so much as donor concerns reflect ambivalence such candidates should undergo additional education and counseling, perhaps postponing the donation until these issues can be resolved (4). Those with significant ambivalence should similarly be counseled and are most likely screened out by the transplant teams during evaluation or themselves opt out of the evaluation or procedure.

On the contrary those without ambivalence appeared to spontaneously make their decision to donate with little deliberation. Such donors may make transplant teams uncomfortable as the process of informed consent involves thoughtfully reviewing and carefully weighing the risks and benefits of the procedure. Simmons found in a cohort of kidney donors the decision was made easily, rapidly and with strong motivation and that “donors [felt] comfortable, probably more comfortable, without extensive deliberation.” (6) Such rapid decision making may appear as if the donor has not fully thought out these issues. While the donation team may want demonstration that the donor has spent time considering their decision, it is notable that deliberating for longer periods of time may indicate ambivalence.

Limitations

There are several limitations to our study. First the study design is cross-sectional. As concerns were surveyed contemporaneously we do not know if ambivalence preceded their concerns and decision making or vice versa. In addition, we do not know what impact the evaluation process may have had on their responses (e.g. if donors were worried before and became ambivalent during the evaluation as they learned about the process and risks). We also do not have data on outcomes nor the donor's experience of donation. Many potential donors were deemed ineligible or were consented too late prior to surgery before they could complete our questionnaires. However we believe that the timing of their disqualification was random relative to our enrollment procedures.

Studies designed to follow potential donors prospectively from their first consideration through the actual decision of whether or not to donate would be valuable to clarify the sequencing of thoughts relevant to the decision making process and the precise role of psychosocial factors in their final decision and concerns about donation. Such a study would be complicated to implement as most donors arrive at the transplant center having already well considered and educated themselves about donation. In addition, donors who make the decision spontaneously on learning of the recipient's need would be difficult to study. Thus while there are other areas of donation decision making that were not assessed we believe we have captured the most relevant elements to the donation experience.

Finally our numbers of respondents was small, thus verifying our results in larger cohorts would be optimal. However, especially with regard to ambivalent donors, they consistently expressed worries across a wide range of medical/surgical outcomes and social/family responsibilities suggesting the associations between ambivalence and concerns is both consistent and valid. In addition, small numbers do not allow us to examine all of the many other possible comparisons that could be interesting and clinically relevant. For example we preliminarily examined differences between right and left lobe donors and found no differences on any measure or item.

A detailed psychosocial examination of potential liver donor candidates can reveal important qualities of those willing to come forward to be considered for living donation. These evaluations are unique to each program and vary as to the content, who performs the assessment, what areas are assessed, and the relevance each team places on the specific criteria with respect to donor candidacy. However, we feel that a careful examination of ambivalence is required to identify those with specific concerns that may prove to predict poorer postdonation psychosocial outcomes. Understanding the associations between donor characteristics and their motives, decision making and concerns about donation will both prepare donor teams to evaluate prospective donor candidates and also improve the preparation of donors for the surgery.

Acknowledgments

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

This research is funded by grants from the Starzl Transplant Institute Junior Investigator Award (Cruz) and an International Transplant Nurses Society research program grant.

Disclosure

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation.

References

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix
  • 1
    Olbrisch ME, Benedict SM, Cropsey KL, Ashworth A, Fischer RA. Characteristics of persons seeking to become adult-to-adult living liver donors: A single U.S. center experience with 150 donor candidates. In: Weimar W, Bos MA, van Busschbach JJ, eds. Organ transplantation: Ethical, legal and psychosocial aspects. Towards a common European Policy. Lengerich , Germany : PABST Science Publishers, 2008: 261269.
  • 2
    DiMartini A, Porterfield K, Fitzgerald MG, et al. Psychological profile of living liver donors and post-donation outcomes. In: Weimar W, Bos MA, van Busschbach JJ, eds. Organ transplantation: Ethical, legal and psychosocial aspects. Towards a common European Policy. Lengerich , Germany : PABST Science Publishers, 2008: 216220.
  • 3
    Achille M, Vaillancourt I, Beaulieu-Pelletier G. Living kidney donors: Are women motivated by love and men by logic? In: Weimar W, Bos MA, van Busschbach JJ, eds. Organ transplantation: Ethical, legal and psychosocial aspects. Towards a common European Policy. Lengerich , Germany : PABST Science Publishers, 2008: 321326.
  • 4
    Dew MA, Switzer GE, DiMartini AF, Myaskovsky L, Crowley-Matoka M. Psychosocial aspects of living organ donation. In: Tan HP, Marcos A, Shapiro R, eds. Living donor organ transplantation, NY : Taylor and Francis, 2007: 726.
  • 5
    Goldman LS. Liver transplantation using living donors. Preliminary donor psychiatric outcomes. Psychosomatics 1993; 34: 235240.
  • 6
    Simmons RG, Simmons RL, Marine SK. Gift of life: The effect of organ transplantation on individual, family, and societal dynamics. New Brunswick , NJ : Transaction Books, 1987.
  • 7
    Switzer GE, Dew MA, Butterworth VA, Simmons RG, Schimmel M. Understanding donors’ motivations: A study of unrelated bone marrow donors. Soc Sci Med 1997; 45: 137147.
  • 8
    Switzer GE, Dew MA, Simmons RG. Donor ambivalence and postdonation outcomes: Implications for living donation. Transpl Proc 1997; 29: 1476.
  • 9
    Switzer GE, Myaskovsky L, Goycoolea JM, Dew MA, Confer DL, King R. Factors associated with ambivalence about bone marrow donation among newly recruited unrelated potential donors. Transplantation 2003; 75: 15171523.
  • 10
    Switzer GE, Dew MA, Goycoolea JM, Myaskovsky L, Abress L, Confer DL. Attrition of potential bone marrow donors at two key decision points leading to donation. Transplantation 2004; 77: 15291534.
  • 11
    Myaskovsky L, Almario D, Switzer GE, et al. Is donating a kidney associated with changes in health habits?[abstract]. Am J Transplant 2010; 10: 536.
  • 12
    Corley MC, Elswick RK, Sargeant CC, Scott S. Attitude, self-image, and quality of life of living kidney donors. Nephrol Nurs J 2000; 27: 4350.
  • 13
    Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). 1. Conceptual framework and item selection. Med Care 1992; 30: 473483.
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    Rosenberg, M. Society and the Adolescent Self-Image. Revised edition. Middletown , CT : Wesleyan University Press, 1989.
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    Obidoa CA, Reisine SL, Cherniack, M. How does the SF-36 perform in healthy populations? A structured review of longitudinal studies. J Social Behav Health Sci 2010; 1: 118.
  • 16
    Nyenhuis DL, Yamamoto C, Luchetta T, Terrien A, Parmentier A. Adult and geriatric normative data and validation of the profile of mood states. J Clin Psychol 1999; 55: 7986.
  • 17
    American Red Cross statistics for US blood donation in the last year. Available from: http://www.redcross.org. Accessed January 22, 2011.
  • 18
    Donate Life America's National Donor Designation Report Card. Available from: http://www.donatelife.net. Accessed November 3, 2011.
  • 19
    Thiel GT, Nolte C Tsinalis D. Gender imbalance in living kidney donation in Switzerland Transpl Proc 2005; 37: 592594.
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    Boulware LE, Ratner LE, Cooper LA, Sosa Ja, LaVeist TA, Powe NR. Understanding disparities in donor behavior race and gender differences in willingness to donate blood and cadaveric organs. Med Care 2002; 40: 8595.
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    Hermann HC, Klapp BF, Danzer G, Papachristou C. Gender-specific differences associated with living donor liver transplantation: A review study. Liver Transpl. 2010; 16: 375386.
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    Rosenberger PH, Jokl P, Ickovics J. Psychosocial factors and surgical outcomes: An evidence-based literature review J Am Acad Orthop Surg 2006; 14: 397405.

Appendix

  1. Top of page
  2. Abstract
  3. Methods
  4. Results
  5. Discussion
  6. Acknowledgments
  7. Disclosure
  8. References
  9. Appendix

Dr. Roberta Simmons’ Donation Specific Instruments

(copyright © 1992 Roberta G. Simmons, Ph.D. Some items published in R.G. Simmons et al., The Gift of Life, original edition copyright © 1977 John Wiley & Sons, Inc., with additional copyright © 1987, Transaction Books, Inc.)

Deciding To Donate

1. Are there other possible donors for your liver recipient?

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2. Which of the following best describes the first time you ever heard about living liver donation.

1_ Before my recipient got sick.

2_ At the time my recipient was first diagnosed.

3_ Some time after my recipient was listed for transplantation.

4_ Other, please describe.

3. Please describe your reasons for originally volunteering to be tested as a potential liver donor for your recipient.

inline image

The following questions ask for additional information about your decision to be a liver donor. Although the items may seem repetitious, all of the information is important.

4. From what sources did you learn about living liver donation? (CHECK ALL THAT APPLY)

1_ Family

2_ Recipient

3_ My local doctor

4_ Medical personnel at the transplant center

5_ Other donor

6_ Other transplant recipient

7_ Written literature

8_ On the internet

9_ Other, specify:______________________________________________________________

5. How did you learn that you could donate part of your liver to your recipient at this time? Was it that….

1_ your recipient first contacted you and made it clear that you could donate.

2_ an employee of the medical center first contacted you.

3_ another family member contacted you, specify:

4_ you knew you could donate and you first contacted the medical center or your recipient.

5_ other, specify:

6. When you first heard that your recipient needed a liver donation, when did you decide to be tested to see if you could donate?

1_ Immediately.

2_ Within a day.

3_ Within a week.

4_ Within a month.

5_ Within a few months.

6_ Within a year.

7_ More than a year.

7. Some liver donors told us that they postponed thinking about the big decision to donate, but just made the smaller decisions one step at a time—first deciding to undergo blood tests, then deciding to undergo a surgical evaluation, and so on. Did you also postpone thinking about the big decision to actually donate a part of your liver?

1_ Definitely.

2_ Sort of.

3_ No.

8. At what step in the procedure did you ``seriously consider'' donating to your recipient?

1_ When I first learned about the disease my recipient has.

2_ When I first learned my recipient might require a liver transplant.

3_ When I was approached about being tested for donation.

4_ When I learned that I was medically cleared by the transplant team to donate.

5_ Other, please describe.

9. At what step in the procedure did you first definitely decide you would be a liver donor?

1_ When I first learned about the disease my recipient has.

2_ When I first learned my recipient might require a liver transplant.

3_ When I was approached about being tested for donation.

4_ When I learned that I was medically cleared by the transplant team to donate.

5_ Other, please describe

______________________________________________________________

10. Did you consult any of the following persons about your decision to donate?

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11. Did you consult any professionals about your decision to donate?[CHECK ALL THAT APPLY]

1_ My local doctor.

2_ Medical personnel at the transplant center.

3_ A member of the clergy.

4_ A lawyer.

5_ Employer.

6_ Therapist.

7_ Other, specify:______________________________________________________________

8_ Consulted no professionals.

12. Was there anyone who particularly wanted you to donate, or who encouraged you to do so?

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13. Was there anyone who suggested any problems about donating or who tried to discourage you from donating?

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Items on Motivation for Donating

Donors have many reasons for deciding to be a liver donor. We would like to know which of the following describe your primary reasons. On the scales below, where 1 means “not at all true” and 7 means “very true,” circle how true each statement is about your reasons for donating.

 1.I am donating because I see myself as the kind of person who helps others.
 Not at all true1234567Very true
 2.I am donating because I was raised to believe that we should help others.
 Not at all true1234567Very true
 3.I am donating because life has been good to me, and I felt I should give something back in return.
 Not at all true1234567Very true
 4.I am donating because by helping others, I am helping to make this a better society in general.
 Not at all true1234567Very true
 5.I am donating because I felt it would be a good way to relieve my recipient's suffering.
 Not at all true1234567Very true
 6.I am donating because I can imagine how it must feel to be waiting for a liver transplant.
 Not at all true1234567Very true
 7.I am donating because my religious beliefs suggest that I should help others.
 Not at all true1234567Very true
 8.I am donating because donating doesn't really cost me much.
 Not at all true1234567Very true
 9.I am donating because I felt a moral obligation to donate.
 Not at all true1234567Very true
10.I am donating because donating makes a truly significant contribution to the life of another.
 Not at all true1234567Very true

Imagine now that you have already donated. Rate the likelihood of each of the following statements.

1.I will feel better about myself.
 Very unlikely12345678910Very likely
2.My family will express gratitude to me.
 Very unlikely12345678910Very likely
3.My family will hold me in higher esteem.
 Very unlikely12345678910Very likely
4.I will have helped my recipient in a significant way.
 Very unlikely12345678910Very likely
5.I will feel good inside.
 Very unlikely12345678910Very likely
6.I will have relieved my recipient's suffering.
 Very unlikely12345678910Very likely
7.I will feel as if my life is more worthwhile.
 Very unlikely12345678910Very likely
8.I will feel fulfilled.
 Very unlikely12345678910Very likely
9.This will give a special meaning to my life.
 Very unlikely12345678910Very likely

Concerns About Donating

1. Some people thinking about liver donation have concerns about the medical procedure. Below is a list of the concerns that a potential liver donor might have. Please mark all concerns from the list that you have ever had about donating.

1_ That the surgery might be painful.

2_ About undergoing general anesthesia.

3_ That the surgery might damage my own health.

4_ That my recovery might be difficult.

5_ Other medical concerns, please specify:______________________________________________________

6_ I have never had medical concerns.

2. Do you think that your liver donation will have any long-term effects on your health?

1_ Definitely

2_ Probably

3_ Maybe

4_ No long-term effects

3. Sometimes I worry that the liver donation will damage my health.

1_ Strongly agree

2_ Agree

3_ Disagree

4_ Strongly disagree

4. After my liver donation, I worry that I will never feel physically 100% again.

1_ Strongly agree

2_ Agree

3_ Disagree

4_ Strongly disagree

5. How often do you worry about the overall effects of the liver donation procedure on you?

1_ Often

2_ Sometimes

3_ Seldom

4_ Never

6. Below is a list of some of the work and family related concerns that a potential liver donor might have. Please mark all concerns from the list that you have ever had about liver donation.

1_ About missing time from work for the donation.

2_ About missing important family activities.

3_ About who would take care of my children or family members.

4_ That my family would worry about me.

5_ About what friends or other relatives would think.

6_ About who would pay for the procedure.

7_ Other concerns, please specify:_______________________________________________________

8_ I have never had any work, family, or financial concerns.

Ambivalence Scale

1. Would you say you…

1_ knew right away you would definitely be a liver donor when you first heard that your recipient was in need or

2_ did you think it over.

2. How hard a decision was it for you to decide to donate? Would you say it was…

1_ very hard.

2_ somewhat hard.

3_ a little hard.

4_ not at all hard to decide.

3. How would you have felt if you had found out that you couldn't donate for some reason. Do you think you would have felt…

1_ very disappointed.

2_ a little disappointed.

3_ a little relieved.

4_ very relieved that you couldn't donate.

4. Many donors have doubts and worries going into the procedure even though they go through with it. Have you ever had any doubts about donating?

1_ yes.

2_ no.

5. I would really want to donate myself even if someone else could do it. Do you…

1_ agree a lot.

2_ agree a little.

3_ disagree a little.

4_ disagree a lot.

6. I sometimes feel unsure about donating. Do you…

1_ agree a lot.

2_ agree a little.

3_ disagree a little.

4_ disagree a lot.

7. I sometimes wish the transplant recipient was getting a liver from someone else instead of from me. Do you…

1_ agree a lot.

2_ agree a little.

3_ disagree a little.

4_ disagree a lot

The Rosenberg Self-Esteem Scale

Below is a list of statements dealing with your general feelings about yourself. If you ``strongly agree'', circle SA. If you agree with the statement, circle A. If you disagree, circle D. If you strongly disagree, circle SD.

  Strongly agreeAgreeDisagreeStrongly disagree
  1. Scoring: SA = 3, A = 2, D = 1, SD = 0. Items 3, 5, 8, 9 and 10 are reverse scored, that is, SA = 0, A = 1, D = 2, SD = 3. Sum the scores for the 10 items. The higher the score, the higher the self-esteem.

  2. The scale may be used without explicit permission. The author's family, however, would like to be kept informed of its use:

  3. The Morris Rosenberg Foundation

  4. c/o Department of Sociology

  5. University of Maryland

  6. 2112 Art/Soc Building

  7. College Park, MD 20742-1315

 1I feel that I’m a person of worth, at least on an equal plane with others.SAADSD
 2I feel that I have a number of good qualities.SAADSD
 3All in all, I am inclined to feel that I am a failure.SAADSD
 4I am able to do things as well as most other people.SAADSD
 5I feel I do not have much to be proud of.SAADSD
 6I take a positive attitude toward myself.SAADSD
 7On the whole, I am satisfied with myself.SAADSD
 8I wish I could have more respect for myself.SAADSD
 9I certainly feel useless at times.SAADSD
10At times I think I am no good at all.SAADSD
The Pearlin Mastery Scale

How strongly do you agree or disagree with these statements about yourself?

  Strongly agreeAgreeDisagreeStrongly disagree
  1. Note that items 4 and 6 need to be reverse coded.

1There is really no way I can solve problems I have.SAADSD
2Sometimes I feel that I am being pushed around in life.SAADSD
3I have little control over the things that happen to me.SAADSD
4I can do just about everything I set my mind to do.SAADSD
5I often feel helpless in dealing with the problems of life.SAADSD
6What happens to me in the future mostly depends on me.SAADSD
7There is little I can do to change many of the important things in my life.SAADSD