Original Clinical ScienceçLiver

Discrepancy in Psychological Attitudes Toward Living Donor Liver Transplantation Between Recipients and Donors Kosuke Hayashi, MD,1 Hiroyuki Uchida, MD, PhD,1,2 Chie Takaoka, MS,3 Yuka Izawa, MS,3 Masahiro Shinoda, MD, PhD,4 Hideaki Obara, MD, PhD,4 Osamu Itano, MD, PhD,4 Joichiro Shirahase, MD, PhD,1 Minoru Tanabe, MD, PhD,5 Yuko Kitagawa, MD, PhD,4 and Masaru Mimura, MD, PhD1 Background. Mutual understanding between recipients and donors is indispensable when living donor liver transplantation (LDLT) is performed, which, however, has gained little attention and remains unaddressed in the literature. Methods. Fifty-

seven pairs, a recipient (mean ± SD age at the operation, 48.3 ± 10.6 years; mean ± SD years after the operation, 6.2 ± 4.7 years) and his or her donor, who underwent LDLT completed a 13-item questionnaire on a 7-point Likert scale (1: strongly agree to 7: strongly disagree) that was designed to assess for their psychological attitudes toward transplantation. They were also asked to estimate their donor's or recipient's response to the questionnaire, respectively. Values of interest were compared between groups, using paired t tests. Following Bonferroni correction, a P value less than 0.0038 (0.05/13) was considered statistically significant. Results. Significant differences were observed between actually answered and estimated responses in 7 of the 13 items in the questionnaire for donors. For example, donors did not feel pressure to become a donor to the same degree as their recipients estimated (4.6 ± 1.9 vs 3.4 ± 1.8). In contrast, only 1 item showed a significant difference between actually answered and estimated responses in the questionnaire for recipients; recipients did not worry about the transplanted liver compared to their donors' estimation (3.1 ± 1.9 vs 2.1 ± 0.8). Conclusions. Recipients did not fully understand the donors' feelings toward LDLT, whereas donors almost correctly understood their recipients' attitudes. Our findings clearly revealed the gap in their mutual understanding and emphasize the need of psychological education to bridge the gap. (Transplantation 2015;99: 2551–2555)

L

iving donor liver transplantation (LDLT) has played an irreplaceable role in the treatment of end-stage liver disease, especially in Japan where deceased donors are not

Received 28 December 2014. Revision received 17 February 2015. Accepted 1 March 2015. 1

Department of Neuropsychiatry, Keio University School of Medicine, Tokyo, Japan.

2

Geriatric Psychiatry Division, Centre for Addiction and Mental Health, Toronto, Canada.

3

Department of Nursing, Keio University Hospital, Tokyo, Japan.

4

Department of Surgery, Keio University School of Medicine, Tokyo, Japan.

5

Department of Hepatobiliary and Pancreatic Surgery, Tokyo Medical and Dental University, Tokyo, Japan. The authors declare no funding or conflicts of interest. K.H. participated in research design, data analyses, and writing of the article. H.U. participated in research design, data analyses, and writing of the article. C.T. participated in the collection of the data and analyses. Y.I. participated in the collection of the data and analyses. M.S. participated in research design and the collection of the data. H.O. participated in research design and the collection of the data. O.I. participated in research design and the collection of the data. J.S. participated in research design and the performance of the research. M.T. participated in research design and the performance of the research. Y.K. participated in research design and the performance of the research. M.M. participated in research design and the performance of the research. Correspondence: Kosuke Hayashi, MD, Department of Neuropsychiatry, Keio University School of Medicine, 35 Shinanomachi, Shinjuku-ku, Tokyo 160-8582, Japan. ([email protected]). Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved. ISSN: 0041-1337/15/9912-2551 DOI: 10.1097/TP.0000000000000800

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common enough to meet the demand. In fact, this mode of treatment was performed in approximately 98% of the total 6642 liver transplantations as of 2011.1 It is critically important to evaluate not only physical but also psychological conditions of donors in LDLT in light of the potentially serious impact on their mood and mental quality of life (QOL).2-5 In fact, Trotter et al2 have shown that 16 (4.1%) of 392 donors in LDLT had 1 or multiple psychiatric complications, including severe ones, such as suicide, accidental overdose, and suicide attempt after the transplantation. Moreover, careful attention should also be paid to recipients' mental health when LDLT is performed because receiving a transplant from a living donor could result in psychological distress in recipients. Indeed, patients who underwent LDLT showed significantly lower scores in a majority of domains on the 36-item ShortForm Health Survey (SF-36), including mental health and mental component summary domains (ie, worse mental health condition), compared to those who received a deceased donor liver transplantation.6 Although the psychological conditions of donors and recipients have been individually investigated, their psychological interaction has gained little attention and remains unaddressed in the literature. If recipients and donors do not have the same expectations and attitudes toward LDLT, it would be expected to have a negative impact on mutual understanding between them as well as their motivation toward the treatment. This aspect is critically important in light of burdens of long-term treatment, including follow-up www.transplantjournal.com

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after LDLT, both on recipients and donors. To shed light on this important issue, in the present study, we examined psychological interactions and elucidated gaps in mutual understanding between recipients and donors who underwent LDLT. MATERIALS AND METHODS Subjects and Study Design

In this cross-sectional study, recipients and donors who successfully underwent LDLT at the Department of Surgery, Keio University Hospital between June 1997 and December 2013, visited the hospital for follow-up between June 2013 and March 2014, and were aged 20 years or older at transplantation were approached to participate in this survey. The study was approved by the institutional review board of Keio University School of Medicine, and subjects provided written informed consent after receiving detailed information about the protocol. Assessment Measures

Recipients and donors were asked to complete a 13-item questionnaire that was designed to assess psychological attitudes toward transplantation on a 7-point Likert scale (1: strongly agree to 7: strongly disagree). Item 10 was derived from the scale used in the previous survey by the Japanese Liver Transplantation Society,7 whereas the others were newly developed for this study (see Tables 2 and 3). The subjects were also asked to estimate their donor's or recipient's response to the questionnaire, respectively. They were also asked to fill in the SF-36, Japanese Version8-10 and Quick Inventory of Depressive Symptomatology, Self-Report, Japanese Version.11 The SF-36 is a self-assessment questionnaire to measure psychological, physical, and social aspects of QOL, which consists of 8 subscales that can be aggregated into 3 main component summaries: physical, mental, and role-social component summaries. Those subscale scores and component summary scores are standardized to have a mean of 50 and a standard deviation of 10. Higher scores indicate better health. The Quick Inventory of Depressive Symptomatology, Self-Report contains 16 items with a total score ranging from 0 to 27; a higher score indicates more severe depressive symptomatology. Other information collected included: sex, age at transplantation, duration after transplantation, primary diagnosis for recipients, and sex, age at transplantation, duration after the transplantation, and relationship to their recipient for donors. Statistical Analysis

Statistical analyses were carried out, using the IBM SPSS Statistics Version 20 (IBM Corporation, Armonk, NY). Values of interest were compared between groups, using paired t tests. A P value less than 0.05 was considered statistically significant (2-tailed). Bonferroni correction was applied to results of the original 13-item questionnaire; therefore, a P value less than 0.0038 was considered statistically significant for those analyses. RESULTS Characteristics of the Sample

Eighty-one recipients who fulfilled the inclusion criteria were approached for participation in this study; of them,

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80 recipients (98.8%) agreed to participate. Of the corresponding 80 donors who were then approached, 60 donors (75.0%) decided to participate. Three donors failed to provide sufficient data for analyses. As a result, 57 pairs of a recipient and their donor (71.3%) were included in the analyses. Demographic characteristics of the recipients and the donors are summarized in Table 1 and Figure 1. All domain and component summary scores in the SF-36 in the recipients were lower than those in the Japanese general population (mean scores of 50). On the other hand, the donors showed better health conditions when compared to the Japanese general population as 6 of the 8 domain scores and 2 of the 3 component summary scores were higher. Discrepancy in Attitudes Toward Transplantation Between Recipients and Donors

Significant differences were observed between actually answered and estimated responses in 7 of the 13 items in the questionnaire for donors (Table 2). Donors did not feel that their donated liver still belonged to them nor worry about their remaining liver as much as their recipients estimated. The donors did not feel more confident after transplantation as compared to their recipients' estimation. They did not feel that they were looked after well by their recipients and families after transplantation. Neither did they feel hesitant to become a donor as much as their recipients' had estimated. Moreover, they did not wish that there had been a deceased donor nor feel pressure to become a donor to the same degree that their recipients had estimated. On the other hand, in the questionnaire for recipients, only 1 item showed a significant difference between actually answered and estimated responses (Table 3), recipients did not

TABLE 1.

Demographic and clinical characteristics of 57 recipients and donors Characteristics

Male sex Age at transplantation, y Duration after transplantation, y Primary diagnosis Cholestatic liver disease Hepatitis C Acute liver failure Alcohol-related Hepatitis B Others Relationship to recipient Spouse Children Sibling Parent Others QIDS-SR total score

Recipients

Donors

25 (44) 48.3 ± 10.6 6.2 ± 4.7

30 (53) 40.8 ± 13.9 6.2 ± 4.7

16 (28)a 14 (25)b 10 (18) 7 (12)c 5 (9)d 5 (9)e

n.a. n.a. n.a. n.a. n.a. n.a.

n.a. n.a. n.a. n.a. n.a. 5.5 ± 4.2

20 (35) 19 (33) 11 (19) 5 (9) 2 (4) 3.6 ± 3.2

Values are shown as N (%) or mean ± SD. a One patient had a concurrent diagnosis of cancer. b Eight patients had a concurrent diagnosis of cancer. c Two patients had a concurrent diagnosis of cancer. d Two patients had a concurrent diagnosis of cancer. e One patient had a concurrent diagnosis of cancer. QIDS-SR indicates Quick Inventory of Depressive Symptomatology, Self-Report; n.a., not available.

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Hayashi et al

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FIGURE 1. SF-36 domain and component summary scores (Norm-based scoring). PF, physical functioning; RP, role physical; BP, bodily pain; GH, general health; VT, vitality; SF, social functioning; RE, role emotional; MH, mental health; PCS, physical component summary; MCS, mental component summary; RCS, role-social component summary. Values are shown as mean ± SD. Horizontal bars indicate standard deviations.

worry about the transplanted liver as much as their donors' estimation would indicate. DISCUSSION To the best of our knowledge, this is the first study to elucidate the discrepancy in attitudes toward LDLT between recipients and their donors. We found that although recipients did not correctly estimate their donors' psychological conditions in 7 of the 13 items in the questionnaire, donors accurately estimated their recipients' psychological states in all but 1 item. This discrepancy should be focused on when

psychological intervention is provided for patients to provide more effective prevention or treatment of psychiatric conditions that could be caused by LDLT. Recipients did not fully understand their donors' feelings and attitudes toward LDLT; for example, donors were more positively involved in LDLT than their recipients estimated. Previous surveys have also revealed the positive effects of organ donation in donors.12-14 Schult et al14 reported that actual donors showed a better mental QOL after the operation than potential donors, which may be attributable to a positive psychological benefit due to the fact that the donors saved their recipients. Taken together with those previous

TABLE 2.

Donor's attitudes toward transplantation Questions

(1) I always worry about the transplanted liver. (2) I feel that the transplanted liver belongs to me even now. (3) I always worry about my remaining liver. (4) The relationship with my recipient has become better after transplantation. (5) I think my recipient appreciates the transplanted liver. (6) I feel more confident after transplantation. (7) I feel that I am looked after well by my recipient and family after transplantation. (8) I do not want others to know that I was involved in transplantation. (9) I was not hesitant to become a donor. (10) I wished that there had been a deceased donor. (11) I felt that people around me expected I would become a donor. (12) I think that follow-up visits after transplantation are necessary. (13) I hope that my recipient will continue follow-up visits.

Donor's actual response

Response that their recipient estimated

t

P

3.0 ± 1.8 4.9 ± 1.9 4.7 ± 1.7 3.3 ± 1.4 2.3 ± 1.3 4.1 ± 1.6 3.2 ± 1.4 5.6 ± 1.5 2.5 ± 2.1 5.4 ± 1.9 4.6 ± 1.9 3.4 ± 1.7 1.5 ± 0.9

2.5 ± 1.4 3.5 ± 1.7 2.9 ± 1.4 2.8 ± 1.1 2.1 ± 0.8 3.2 ± 1.4 2.5 ± 1.2 5.1 ± 1.7 3.5 ± 1.9 4.0 ± 1.9 3.4 ± 1.8 2.6 ± 1.4 1.6 ± 0.9

1.9 4.5 6.7 2.6 1.3 3.3 3.1 2.4 −3.5 4.6 4.3 3.0 −0.7

0.06

Discrepancy in Psychological Attitudes Toward Living Donor Liver Transplantation Between Recipients and Donors.

Mutual understanding between recipients and donors is indispensable when living donor liver transplantation (LDLT) is performed, which, however, has g...
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