Relevant Factors to Psychological Status of Donors Before Living-Related Liver Transplantation

Abstract

Background. 

While previous surveys have demonstrated the psychological impact on living-related liver transplantation (LRLT) donors, such as anxiety, depression, ambivalence and anger, the details regarding the relevant factors that affect donors' psychological status have not been well described.

Methods. 

To evaluate environmental factors, 66 donors were interviewed to obtain information regarding donors' decision-making motivation, process, conflicts, and internal pressure about donation just before surgery. To determine the donors' psychological status, they completed the State-Trait Anxiety Inventory, Beck Depression Inventory, and World Health Organization Quality of Life 26 standardized psychological tests for anxiety, depression, and quality of life (QOL). Respective recipients completed the same tests separately, in order to determine psychological synchronization with the donors. With regard to motivation, donors were divided into two groups, and further divided into three groups based on processes. Donors were also sorted in groups of those “with conflict” and “with pressure.” Their psychological test results were compared within groups, as well as with those from recipients.

Results. 

Donors from the nonvolunteer or postponement groups were significantly more anxious and depressed than other donors. Donors from the “with conflict” or “with pressure” groups were significantly more anxious, more depressed, and had worse QOL. There was a significant positive correlation between donors' and recipients' test results for anxiety and QOL, especially when donors belonged to the volunteer group.

Conclusions. 

Our results suggest that donors' decision-making process and recipients' psychological status, especially donors' state anxiety should be considered when assessing donors' psychological status before LRLT.

Living-related liver transplantation (LRLT) has developed into an established treatment of end-stage liver disease in Japan. The first LRLT was performed in 1989; since then, the number of recipients has increased to 551 per year in 2004 (426 cases of adult-to-adult LRLT) and 3218 cases (with 1790 cases of adult-to-adult LDLT) in total (¹). LRLT is very beneficial for recipients because of the reduced risk of pretransplantation mortality, and the fact that recipients can receive a well-evaluated liver lobe of good quality. With regard to donors' morbidity, some studies have shown that donor surgery is performed with minimal complications (^2–4).

However, it remains unknown whether LRLT is beneficial for living donors psychologically. Some studies have shown positive effects of donation in donors, including better quality of life (QOL) after donation (^5–7). On the other hand, other studies have shown that there were perioperative donor pain symptoms due to depression, and postoperative psychological distress in 15.7% to 56.7% of donors (^{1, 8, 9}).

Walter et al. found that postoperative complications had no influence on psychosocial outcomes (⁸). In living-related kidney transplant, Simmons et al. (¹⁰) classified donors according to their decision-making process and studied the relationship between the process and their postoperative reaction. They pointed out that an ambivalent or regretful decision to become a donor was an important predictor of postdonation outcomes. Another interesting psychological problem in living related kidney transplantation was the phenomenon of the “Siamese-twin effect,” which referred to the fact that if the donor was ill, the recipient's concern reflected not only the possible harm to the donor, but also anxiety about the transplanted kidney (¹¹).

From these points of view, we regarded donors' preoperative psychological status as important and identified factors that could affect donors' psychological status, such as donors' motivation, decision-making process, conflict between family members about donation, and the physical and psychological status of recipients. We interviewed donors to identify these factors, and also performed psychological tests to quantify donors' and recipients' psychological status and QOL. Finally, we investigated correlations between these factors and test results using SPSS 12.0 software suite for Microsoft Windows.

PATIENTS AND METHODS

Ninety-one pairs of donors and recipients who successively underwent adult-to-adult living donor liver transplantation at the Kyoto University Hospital between November 2001 and July 2003 were enrolled in this study. We performed psychological assessments on the day before the operation. Twenty-four donors were excluded from the study. Of these, 13 were excluded because they were donors in an emergency operation. Eleven donors were excluded because they did not have enough time to attend the psychological assessments due to final physical examinations prior to the operation. One donor was excluded because he was a recipient of a domino living–liver transplant. Therefore, only 66 recipient-donor pairs were eligible. All participants gave written consent to this study. There were no donors selected without the permission of the ethics committee.

Semistructured Psychiatric Interview

The interview was used to obtain various demographic data, and to identify information on the donor's motivation, the process, and any conflicts concerning donation. We interviewed donors separately from their recipients or other family members.

With regard to motivation, we classified donors into two groups: the volunteer group and the nonvolunteer group. The volunteer group consisted of donors who decided to donate without any hesitation or ambivalence under any conditions, and donors who were not classified as nonvolunteers. The nonvolunteer group was further classified according to whether individuals were nondonors and whether there was a conflict among the family members, in order to identify their reason for being a nonvolunteer.

We also classified donors into three groups (deliberative, immediate, or postponement) based on processes according to the Simmons' classification (¹²). The key elements of the “deliberation model” involved the period of conscious deliberation and evaluation of alternatives, including the equally conscious choice of one alternative. Donors in immediate or moral decision–making model were characterized as follows. According to Simmons, the donor of a moral decision-making model “would have to ascribe some responsibility to himself rather than other potential actors or to chance” and “he would have to perceive donation as an act of virtue or an obligation”. Simmons also pointed out their instantaneous character (¹²). Donors in the postponement or stepwise decision model would take action to donate after perceiving themselves as obliged to donate without any decision. Classification was performed by two independent coders. We asked all donors whether the donor lived with the recipient.

Standardized Psychological Tests

Recipients and donors completed the STAI (State-Trait Anxiety Inventory), BDI (Beck Depression Inventory), and WHO (World Health Organization) QOL-26 separately. Recipients completed the tests about 1 week before the operation. We used STAI to distinguish between state and trait anxiety. The BDI was chosen because it had fewer items than other tests for depressive state, and showed no difference between sexes and among age groups, which was necessary for comparing test results between donors and recipients of different age and gender. We also expected to evaluate the severity of the depressive state by using this test (¹³). To assess whether the donors were healthy individuals, we selected the WHO QOL-26, which was designed as a generic test for the general population and had fewer items than other tests.

Comparison of Results

We made comparisons to a normal standard, as well as within groups, which were classified according to motivation, processes, conflicts, and living states. We then used stepwise multiple regression analysis to study correlations between psychological state and QOL, and also between total QOL and subclassified QOL. Donors' data were also compared with those of recipients. Data analysis was performed using the SPSS 12.0 software package.

RESULTS

Donor Characteristics

Characteristics are detailed in Table 1. Among the 66 donors, there were 42 men and 24 women with a mean age of 38.9±12.2 years, and a mean education of 13.3±2.2 years. Fifty-two of 66 donors (78.9%) were married, 10 were unmarried, and 3 were divorced. Twenty-six of 66 donors (39.3%) lived with their recipients. All the donors were expected to have a right lobectomy, so we considered the risk to all donors to be the same.

TABLE 1: Donor characteristics

Medical Status of Recipients

Mean recipient age was 47.2±11.3 years (range, 19–67 years). There were 35 men and 32 women. As shown in Table 2, there were 27 (40.3%) patients with biliary cirrhosis (primary biliary cirrhosis, primary sclerosing cholangitis, biliary atresia), 17 (25.4%) with liver cirrhosis and hepatic cellular cancer, and 20 (29.9%) with liver cirrhosis without hepatocellular carcinoma. Four other patients included a man with citrullinemia, a woman with subacute hepatitis, a woman with Wilson's disease, and a woman with congenital polycystic liver.

TABLE 2: Cause of conflict

Mean morbidity period was 12.1±7.85 years, and mean waiting period was 0.61±0.70 months. Mean Model for End-Stage Liver Disease (MELD) score was 17.10±8.57.

Relationships Between Donors and Recipients

Table 1 shows relationships between donors and recipients. At Kyoto University, relatives within three degrees were permitted to be donors from an ethical point of view. There were 48 blood-related donors and 18 spouses.

Decision-Making Process, Motivation, Conflict in Family Members, and Pressure Concerning Donation

We classified 35 donors (52.2%) as volunteers, 25 donors (37.7%) as nonvolunteers, and 7 donors as unknown with respect to motivation (Fig. 1). We also classified 23 donors (34.3%) as deliberative, 26 (38.8%) as immediate, and 11 (16.4%) as postponement. Classification according to the motivation and the process resulted in 20 positive/immediate, no positive/postponement, 14 positive/deliberative, 4 negative/immediate, 8 negative/deliberative, and 10 negative/postponement donors.

FIGURE 1.: Decision-making process to become a donor.

In the nonvolunteer group, we found 18 donors with some conflict among family members about donation (Table 2). Seven donors were men, and their wives or parents were opposed to the donation because they were anxious about the loss of strength to work after the operation. For four donors, their recipients hoped for cadaveric transplantation (three of four donors were parents of the recipients) while the donors hoped to donate their own liver lobe. There was one donor who was opposed by her father-in-law. The father-in-law was against the donation because the recipient had not asked him about the donation despite the fact that the donor's body belonged to her husband's family, according to the Japanese traditional family system. In another case (patient 16), the sister of the actual donor had initially decided to be a donor candidate because she was of compatible blood type with the recipient. However, when she failed to lose weight and developed a fatty liver from overeating, the actual donor decided to donate despite the fact that her blood type was incompatible. Two donors hesitated to decide to become a donor because they could not discuss the donation with other family members. We could not draw information about the conflict from two other donors.

We identified ‘pressure' in 13 donors. All of them felt no coercion but internal pressure (¹⁰). We believe there was no unethical donation because all the donors freely declared their intention to donate. We informed all donors at their interview that they should not donate if they are being unduly pressured.

Correlation Between Psychological Tests and Various Characteristics of Donors and Recipients

Comparison of Donors' Psychological Test Results With Normal Controls

The mean (minimum-maximum) value of the donors' STAI-S was 41.19 (20–71), STAI-T was 39.21 (20–69), BDI was 4.63 (0–19), and QOL was 3.64 (2.6–5.0). All the mean values of the donors' test results were within the normal range, but there were 15 (22.7%) donors with highly anxious state (STAI-T>54), 3 (4.5%) donors with highly anxious trait (STAI-T>54), and 9 (13.6%) donors with a slight or intermediate depressive state.

Correlation Between Donors' STAI-S, T, BDI, QOL, and Donor Characteristics

There were no significant correlations or differences between the donors' characteristics (age, sex, education level, and marital status) and the results of donors' psychological tests. There were also no significant correlations or differences between donors' characteristics and their QOL.

Correlation Between Donors' STAI-S, T, BDI, and QOL and Recipients' Medical Status

There were no significant correlations between donors' psychological tests and recipients' MELD. We classified donors regarding to the recipients' diagnosis as donors of recipients with and without liver cancer, with and without viral hepatitis, and with and without biliary cirrhosis. We compared the psychological tests results among each groups and there was no significant differences.

Differences in Results Between Donors' STAI-S, T, BDI, and QOL Among the Groups

Donors who belonged to the volunteer group were significantly less anxious (showing a smaller STAI-S score), less depressed, and had a significantly higher QOL than donors from the nonvolunteer group (Fig. 2). Among the three groups that were classified according to processes (immediate, postponement, deliberative), we analyzed differences in results of psychological tests using a Turkey's test because a one-way analysis of variance was significant. STAI-S and BDI scores of the postponement group were significantly higher than those of the immediate and deliberative groups. We did not find any significant differences between the immediate and deliberative groups. QOL scores of the postponement group were significantly lower than that of the immediate group (Fig. 3).

FIGURE 2.: Motivation and donors' psychological tests results.

FIGURE 3.: Process and donors' psychological tests results.

We also analyzed test results among the six subgroups according to motivation and process, and we found that the postponement/nonvolunteer group had significantly higher STAI-S and BDI scores than the immediate/volunteer group.

Among groups classified according to conflict and pressure, the “with conflict” and “with pressure” groups had significantly higher STAI-S, BDI, and significantly lower QOL scores than those of the “without conflict” and “no pressure” groups.

Multiple Regression Analysis

Analysis of differences among subjects showed that the strongest positive correlation with a correlation coefficient of 0.819 was found between QOL and environmental QOL among four subordinate domains (P=0.000). From the psychological test results, we observed a negative correlation with a coefficient of −0.578 between QOL and STAI-S scores (P=0.000). There was a positive correlation between donors' and recipients' psychological test results.

Correlation Between Donors' Psychological Test Results and Recipients' Test Results

Test results of STAI (S+T) and QOL scores in recipients correlated with those in donors. In the immediate/deliberative, living with, with motivation of volunteer, and no conflict groups, test results of STAI and QOL scores showed a significant correlation (Table 3).

TABLE 3: Correlation between donor and recipient psychological tests results

There were no significant correlations between donors' physical QOL and recipients' psychological tests results.

DISCUSSION

Our study showed the following results. First, the psychological status of donors was not relevant to the characteristics of donor or recipient medical conditions, but was relevant to decision-making motivation and process of donation. Second, factors that contributed to donors' QOL were mostly state anxiety (STAI-S) and environmental QOL. Items for environmental QOL consisted of questionnaires on financial resources, freedom (physical safety and security), health and social care, home environment, opportunities to acquire new information and skills, participation in and opportunities for recreation/leisure activities, physical environment, and transport. Finally, we showed that there was a correlation between the psychological status of donors and recipients regarding QOL and anxiety. It was also interesting that the groups of donors and recipients with a positive attitude toward the operation showed a strong psychological correlation with each other.

Simmons et al. reported findings in living-kidney transplant similar to the first results we obtained. They argued that the decision-making process could affect a donor's psychological status, and that ambivalence about donation could cause negative psychological status after the operation (¹⁰). Another study showed that donor ambivalence was an important predictor of postdonation outcomes in living donation (¹⁴). A study about LDLT also showed that anger before a transplant operation had a negative psychological effect after the operation (¹⁵). If we assumed that our cases with conflict or with postponement/nonvolunteer decision-making fell into ambivalence or anger cases, we could predict that psychological outcomes of such cases would not be good after the operation.

Conflict between family members and donors was one factor that resulted in a worse psychological status in donors. The most frequent cause of conflict was other family members' opposition to male donors. They were opposed because they were afraid that the donor would be unable to work after the operation due to loss of strength (patients 1, 3, and 4), or they were afraid that he would be unable to provide a liver graft when the present family member develops end-stage liver disease (patients 2 and 5) after he gave his liver to the recipient of his original family. In patient 8, the donor's father-in law was against the donation. He claimed that the donor's liver belonged to his family after marriage and not to her original family. This idea was based on traditional Japanese family systems. This case showed that donors' traditional roles as family members and psychological dynamics among members cannot be ignored when donors decide on their attitude toward donation.

The second most frequent cause of conflict was the recipient's hesitancy to receive a transplant. It was interesting that three of seven recipients with parental donors hesitated in receiving an organ, and only 1 of 60 recipients with a nonparental donor showed the same hesitancy. Those three recipients with hesitancy felt guilty that they would harm their parents, and they preferred cadaveric donors. There have been some arguments concerning the psychological aspects of parental donation. When living-related liver donations began, it was argued that the parent should be a living-related donor from an ethical point of view. On the other hand, a study suggested that to be a donor meant a total lack of choice, facing the fear of death and the transition from health to illness (¹⁶). However, our donors suffered because they were not easily allowed to become a donor by their recipients. Compared to Forsberg's cases, our cases did not involve parental donors with pediatric recipients, and our study highlighted characteristic problems of parent-to-child living liver transplants in adult-to-adult parental living–liver transplants, although we could hypothesize that recipients' hesitation implied that their parental donor showed anxiety.

However, it would not be appropriate to conclude that parent-to-child living liver transplantation was a problem. In patient 12, we found that conflict between the recipient (son) and the donor (mother) diminished after the operation, for example. We need to examine more parent-to-child cases, and follow relationships after the operation to identify whether being a parental living donor could be an independent factor affecting the donors' psychological status.

Our second result might reinforce the first result. It could be argued that the process and motivation of decision-making to be a donor would be related to donors' higher state-anxiety and lower environmental QOL, which would in turn result in a donors' lower QOL.

We expected to find the same phenomenon as the “Siamese-twin effect” before LRLT, but we could not detect any correlation between donors' physical QOL and recipients' psychological test results. Nevertheless, it was still interesting that psychological test results of donors and recipients were correlated, especially when the donors were classified as volunteer, immediate/deliberative process, living with their recipients or had no conflict about donation. Walter et al. indicated that openly motivated donors showed denial of anxiety and an ideal donor- recipient relationship (¹⁷). They suggested that “it was important to provide the donor the opportunity to unfold and report as openly as possible about his/her misgivings and anxieties.” Our results also support the need to be careful about such openly motivated (volunteer) donors and their recipients because they tend to synchronize psychologically. Such synchronization could cause harmful psychological effects after the operation, especially in cases when the operation results do not meet their expectations. We found the same synchronization among “immediate/deliberative,” “living with,” and “without conflict to be a donor” pairs. There is also a need to be careful about the psychological status of such pairs, and how such psychological synchronization could affect psychological status after the operation must be studied further.

With regards to our results, it must be taken into account that we presumed that each factor (such as motivation, process, and conflict) was independent and was analyzed accordingly. Because we found that there was a group with an n=0 when we grouped donors according to motivations and processes, these factors could be dependent. To find out what factor was the most relevant to donors' psychological status, or to find how these factors were related to each other, a larger sample size is needed.

LRLT techniques have advanced and the numbers of contraindicated or incompatible donors have been decreasing. The greater burden of decision-making has shifted from the surgical team to the donor (¹⁸). Of course, progress in transplant technology could enable more volunteer candidates to become donors to potentially save the lives of their family members. However, with a greater number of candidates, more conflict in the decision-making process can occur.

Our study suggested that donors' decision-making process should be considered when assessing their psychological status. It also suggests that we need to investigate how psychological status before LRLT will affect the status after LRLT. If it can be shown that donors' decision-making process is the most relevant factor to psychological status after the operation, psychological intervention targeting the donors' decision-making process would be effective for minimizing postoperative psychological problems.

CONCLUSION

Our study suggested that donors' psychological status before LRLT was relevant not to their characteristics, but to their decision-making process to become a donor. Donors were relatively more anxious and more depressed, especially when they reached their decision to donate with postponement, conflict, or with unwilling motivation. To assess donors' psychological status before LRLT, state anxiety should be regarded as important. Our study also showed that donors' psychological status was synchronized with that of their recipient. These findings suggest that the decision-making process to become a donor and the recipient's psychological status should be considered when assessing donors' psychological status before LRLT and psychological intervention targeting the donors' decision-making process might be effective for minimizing postoperative psychological problems.