Introduction

While the literature on transplantation consistently shows that quality of life markedly improves after organ transplantation, few studies to date have examined how organ recipients respond psychologically to the transplant [1].

Evaluations of quality of life are designed to assess the outcomes of various medical interventions, such as organ transplantation. Health-related quality of life (HRQOL) is defined as the individual's subjective evaluation of the impact of organ transplantation on his/her physical, psychological, social, and environmental realms of functioning and well-being [1, 2]. The psychological response to transplantation includes the covert and complex cognitive, emotional, and behavioral outcomes after organ transplantation [2]. Patients’ concerns regarding their medical condition post-transplant require that the patients adopt changes in lifestyle, including, inter alia, infection care, weight maintenance, properly balanced diet, strict and continued administration of immunosuppressive drugs, and adherence to the advice of the medical staff for maintaining well-being and reducing complications [3]. In every stage, from the first surgical evaluation to the postoperative rehabilitation, multiple and diverse psychological and psychosocial problems can jeopardize the patient’s adjustment and affect therapeutic results [4, 5]. All of these concerns and difficulties may lead to physical, family, psychological, and/or socioeconomic hardship, which influences HRQOL [5]. Much more than any other surgical procedure, organ transplantation has a psychological and social impact relating to representation of the self and one’s body image [6,7,8,9,10,11,12].

Post-transplant quality of life and psychological responses are constructs which are used to assess a variety of psychosocial aspects after organ transplantation [1]. Considering the importance of psychosocial factors in organ transplantation, this study aims to investigate differences and similarities between HRQOL and the results of the Transplant Effects Questionnaire (TxEQ) for kidney, lung, liver, and heart recipients; to correlate variables and compare them in relation to gender, religion, type of transplanted organ, and length of time after transplantation.

Materials and methods

The study was approved by the appropriate institutional review board, approval number 2019133. Participants signed informed consent forms to be interviewed and to allow the research team to use their data.

Participants

The general population targeted are Jewish Israeli and Muslim Israeli recipients of lung, liver, heart, and kidney transplants, who underwent the transplantation at least three years ago. To obtain data concerning HRQOL and TxEQ, data were collected from a total sample of 427 transplant recipients under follow-up; data obtained from three respondents were omitted from the statistical analysis because the respondents did not fully answer all questions, leaving a final sample size of 424. The sampling method was snowball and convenience sampling as the respondents agreed to answer an online questionnaire following an ad we posted in the social media. Prior to the study, the authors did not have any relationship with the participants. Participants knew that the topic of the study is health-related quality of life. Thanks to the high rates of kidney donations and the success of kidney transplantation, the kidney recipients represent the largest group, as compared to liver, heart, and lung recipients. The average post-transplantation time is seven years. Inclusion criteria were (1) age—at least 18; maximal age 55; and (2) at least three years have elapsed since the transplantation. Exclusion criteria were recipients who underwent the transplantation within the past three years, and we did not include minors or recipients older than 55. Respondent demographics are shown in Table 1.

Table 1 Sample characteristics
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Tools

WHOQOL-BREF questionnaire

We used the WHOQOL-BREF questionnaire consisting of 36 items measuring four domains: physical, psychological, social, and environmental [1]. The questionnaire was validated after translation into Hebrew in a group. The translation was accomplished by conducting forward and backward translation. The translation was conducted by a professional translator who has over 30 years of experience and specializes in translating articles in the areas of social sciences and medicine. Adjustments had to be made between the original and the translated questionnaire with regard to certain medical terms: The terms that were modified were (a) ‘harm' instead of ‘damage' to the transplanted organ; (b) ‘medication treatment' instead of ‘drug regime' which is an unfamiliar concept in Hebrew; and (c) ‘transplant' instead of ‘graft.' Because there are different nuances in the Hebrew language, we opted to modify these words to similar ones that better convey what the questionnaires are designed to examine.

All domains in the scale were piloted and met minimal criteria (0.7) for internal consistency, and Cronbach’s alpha ranged from 0.73 to 0.86.

Transplant Effects Questionnaire (TxEQ)

We used the TxEQ in order to collect data on five dimensions in recipients‘ responses to transplantation as well as in their self-care behavior [13]. The five dimensions are as follows: worry about transplant (sample item: ‘I am worried about damaging my transplant'); guilt regarding donor (sample item: ‘I feel guilty about having taken advantage of the donor'); disclosure (sample item: ‘I avoid telling other people that I have a transplant'); medication adherence (sample item: ‘Sometimes I forget to take my anti-rejection medicines'); and responsibility (sample item: ‘I think that I have a responsibility to the transplant team to do well'). All of the dimensions in the scale were piloted and met minimal criteria (0.7) for internal consistency, and Cronbach’s alpha ranged from 0.75 to 0.88.

The HRQOL and the TxEQ scales were piloted on a group of 38 transplant recipients, aged 25–50, 20 of them were male, 16 of them were Jewish, and 22 were Arab. The mean time after transplant was 6.81 years (SD = 2.98); of these respondents, 16 were kidney recipients, 9 were liver recipients, 7 were heart recipients, and 6 were lung recipients.

Additional aspects

In addition, we posed questions aimed at creating three indices measuring the following data: (a) the extent to which the respondent thinks about the donor (for a living donor) or about the deceased donor's family (sample item: ‘I tend to think a lot about the donor/ the deceased donor's family'). Cronbach’s alpha was 0.93; (b) the extent s/he feels committed to continue to be healthy in order to justify the donation from the living donor or from the deceased donor’s family (sample item: ‘I feel that I must be healthy in order to justify the donated organ I received'). Cronbach’s alpha was 0.82; and (c) one item measuring the extent to which s/he thinks their personality traits have been changed postoperative (single item: ‘I feel that I have new personality traits that I did not have before the transplantation').

Data collection

We created an online version of the research questionnaire using the Qualtrics software. Links to the survey were distributed on the websites of two not-for-profit organizations: one of nephrology nurses (The Association for Transplant Coordinators affiliated with the National Transplant Center) and the other of organ recipients. We also posted the link on social media, and respondents shared the link with other organ recipients.

Data analysis

Statistical analyses were performed using the SPSS-PC (v22) statistical package. Prior to data analysis, data cleaning was performed and the data set was examined for normal distribution characteristics. After cleaning and verifying the raw data, complete data were available for 424 participants. Descriptive statistics were used to describe the sample. We performed a stepwise regression analysis model in order to explore differences between recipients of different organs. We set the significance level to be alpha = 0.05.

Results

Descriptive statistics of the questionnaire items of HRQOL and TxEQ are shown in Table 2.

Table 2 Descriptive statistics of questionnaire items
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HRQOL

As can be seen in Fig. 1, the recipients of different organs reported different levels of HRQOL. Liver recipients reported the highest level of HRQOL in all of the four dimensions of HRQOL; heart recipients reported lower HRQOL than liver recipients but higher than kidney and lung recipients; kidney and lung recipients had a relatively lower HRQOL.

Fig. 1
figure 1

HRQOL by organ (means and SD)

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Scores of TxEQ

As can be seen in Fig. 2, the recipients of different organs reported different levels in the dimensions of TxEQ. Recipients of all four organs share similar levels in ‘worry,' ‘disclosure,' and ‘adherence,' i.e., all four organ recipients were very worried, with means close or equal to 5 on a five-point Likert scale; all four organ recipients were very reluctant to disclose their being transplant recipients, with means around 4.6 on a five-point Likert scale; and all four organ recipients expressed high levels of adherence, with means around 1.2 on a five-point Likert scale. (The wording of the questions pertaining to medical adherence is reversed in the original questionnaire, meaning that lower numbers denote higher medical adherence.) It can be deduced that all recipients remain worried and concerned about their health for a long time after the transplantation; hence, their medical adherence is quite high. It can also be concluded that all four organ recipients prefer to keep the information about their being a transplant recipient a secret.

Fig. 2
figure 2

TxEQ by organ (means and SD)

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Recipients of kidney and liver have a relatively higher level of ‘guilt' as compared to heart and lung recipients (Means of 2.72 and 2.45 versus 1.82 and 1.6, respectively, on a five-point Likert scale); this is apparently because a large number of kidney and liver organs come from living donors. Recipients of kidney and heart have relatively higher ‘responsibility' as compared to liver and lung recipients (Means of 3.68 and 3.63 versus 3.2 and 2.79, respectively, on a five-point Likert scale).

Predictors of HRQOL

Complete data were obtained from 424 patients for all the variables that were entered into the regression model. In order to predict the four dimensions of HRQOL of the participants, four linear regressions were performed. Table 3 describes the coefficients of a multivariate linear regression analyses. As can be seen in Table 3, the type of organ transplanted was found to be a crucial factor in determining HRQOL. Receiving a liver has the largest positive impact on all four dimensions of HRQOL (0.699 < B < 1.431).

Table 3 Predicting HRQOL—results of Multivariate Linear Regression Analyses
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The summary of the regression analysis for the HRQOL’s four sub-scales (physical, psychological, social, and environmental) is listed in Table 3. The model of 13 variables accounted for 76.1% of the total variance in the physical HRQOL sub-scale score (p < 0.0001).

The model of 13 variables accounted for 85.9% of the total variance in the psychological HRQOL sub-scale score (p < 0.0001).

The model of 13 variables accounted for 72.0% of the total variance in the social HRQOL sub-scale score (p < 0.0001).

The model of 13 variables accounted for 67.6% of the total variance in the environmental HRQOL sub-scale score (p < 0.0001).

Psychological connection with the donor/deceased donor family

We conducted a One-Way ANOVA in order to detect differences between different organ recipients with regard to their perceived psychological connection with the donor/deceased donor’s family. A post hoc analysis revealed that heart recipients report a relatively higher perceived psychological connection to the donor's family (M = 3.88 on a five -point Likert scale) as compared to the other organ recipients. Table 4 presents these findings.

Table 4 Psychological connection with the donor/deceased donor family; One-Way ANOVA
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Commitment to be healthy for the living donor/deceased donor's family

We conducted a One-Way ANOVA in order to detect differences between different organ recipients with regard to the commitment to be healthy in order to justify the donation from the living donor/deceased donor's family. A post hoc analysis revealed that kidney and liver recipients report a relatively higher commitment to be healthy for the living donor (M = 4.68 and M = 4.81, respectively, on a five-point Likert scale) as compared to the other organ recipients; commitment to be healthy in order to justify the donation from a deceased donor was relatively low in all four organ recipients. Table 5 presents these findings.

Table 5 Commitment to be health by organ and
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Perceived change of personality traits

We conducted a One-Way ANOVA in order to detect differences between different organ recipients with regard to perceived changes in the recipient’s personality traits. A post hoc analysis revealed that only heart recipients reported feeling their personality had changed post-transplantation. Table 6 presents these findings.

Table 6 Perceived change of personality traits; One-Way ANOVA
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While heart recipients report a relatively higher tendency to feel that their personality traits have changed as a result of their transplant (M = 3.56 on a five-point Likert scale), the other organ recipients do not report similar feelings.

Discussion

The empirical focus of this article is an attempt to address the relative paucity of research on differences in HRQOL between recipients of different organs. In this study, we have documented the HRQOL differences between recipients of kidney, liver, lung, and heart transplants. We also explored hitherto unstudied factors that have an impact on the HRQOL of transplant recipients. One of the distinctive features of the current study is that data were collected from recipients for varying periods of time after the transplantation, which gave an opportunity to detect changes in HRQOL over time. Furthermore, this is the first study to examine organ recipients' feeling that their personality traits have changed as a result of the transplant.

The scores of physical health HRQOL were markedly higher among Arabs, among liver and heart recipients, among those who received a living donor graft, and among those who feel less guilt and responsibility.

The scores of psychological HRQOL were markedly higher among Arabs, among liver and heart recipients, and among recipients a longer time after transplantation; also, among those who tend to maintain more secrecy about the transplant, those who received a living donor graft, and those who feel a stronger psychological connection to the donor/donor's family.

The scores of social relationship HRQOL were markedly higher among Arabs, among liver and heart recipients, and among those who feel a stronger psychological connection to the donor/donor's family and a lower commitment toward them.

The scores of environmental HRQOL were markedly higher among Jews, among liver and heart recipients, among those who received a living donor graft, as well as among those who feel less guilty and those who feel a stronger psychological connection to the donor/donor's family.

There are four major reasons that patients prefer to maintain secrecy regarding their transplant: (1) Superstition related to the “evil eye”; (2) Concern that this may cause people to pity them; (3) Fear that the transplanted organ will be rejected or will fail; (4) Fear that if people know of a genetic illness that caused the need for transplant, this may affect their children’s chances to marry.

Many patients prefer to keep their transplant a secret because many of them—both Arabs and Jews—believe, each according to their own folk superstitions, that people who are envious of them might cast an “evil eye” upon them. The average waiting time for an organ is 5–6 years. Consequently, if someone receives an organ, they are afraid to tell acquaintances, and especially fellow-patients on the waiting list who have not yet been notified that an organ is available for them, because they wish to avoid arousing envy. Even when the patients know that someone has already undergone the transplant, the transplant recipient professes to be dissatisfied with the situation and claims that he would have preferred to continue dialysis; this is so that the other transplant candidates who are still waiting will not be envious.

Study limitations

Some limitations of our study design must be considered. A self-selection bias might have been at work, where the respondents with a higher HRQOL agree in larger numbers to take part in the study; hence, our results may represent an over-estimation of recipients' HRQOL. Another selection bias stems from the fact that only those who scored a relatively high physical level of health HRQOL have survived. The snowball sampling technique may have led to some biases; for example, recipients who scored high on the social dimension of the HRQOL would tend more to circulate the questionnaire among other transplant patients, so that there might be an over-representation of patients with a higher rating in the social dimension of HRQOL. We purposely avoided intervening in the data gathering stage and preventing these biases so as not to influence the results of the sampling.

Practical recommendations

Based on the results, we propose the following practical recommendations to promote organ recipients' HRQOL:

  • In most cases, after a transplantation the medical staff devotes much attention to the physical state of the graft, whereas much less care is dedicated to the psychological and emotional aspects of the postoperative recipient. Accordingly, awareness of the difficulties and limitations of transplant patients should be raised after transplantation, through workshops, lectures, support groups, etc. held for the recipients and their relatives.

  • Patients and their families should be offered assistance by a social worker and/or psychologist during the treatment process to help them cope with mental stress and difficulties. Family and social support should be encouraged to improve the mental and emotional state of the transplant recipient. An intervention program should be designed for transplant recipients whose aim is to reduce tension, worry, stress, and difficulty in adjusting to the new organ and the new lifestyle required.

  • Studies have found that guilt after transplantation complicates the emotional and psychological well-being of the recipients post-transplant [14]. It is advisable to design an intervention program of support and follow up to alleviate feelings of guilt for recipients who received organs from families of deceased donors.

  • Nonadherence to immunosuppressive medication post-transplant constitutes a common problem among transplant recipients [15]. Hence, encouraging feelings of responsibility and commitment should be regarded as a therapeutic goal in order to improve medication adherence.

  • Low HRQOL is associated with increased risks of hospitalizations, graft failure, and mortality in organ recipients [16]; hence, all four dimensions of HRQOL should be monitored on a regular basis.

  • Traumatic shame and guilt, as consequences of transplantation, have a profound impact on proneness to depression, anxiety, and other negative effects on psychosocial aspects of HRQOL [17]. Shame constitutes a more complex mental process than guilt because it involves attribute processing of core dimensions of one's personality, self, and identity. The experience of shame usually involves self-appraisal, diminishment of self-esteem and personal integrity, whereas guilt does not necessarily involve internal appraisal processes about the self as 'good' or 'bad' [16]. Guilt and shame should be the focus of psychological interventions for organ recipients suffering from feelings of shame and/or guilt.

  • Create a support group on social media administered by a psychologist or social worker for all transplant recipients so that they can support each other and exchange information about the experience of coping with life after transplantation.

  • The Parent Department (the department where the transplant was carried out) should offer information and support by phone to provide a quick and safe response to transplant recipients by the nursing, medical, and psychosocial staff in the hospital to help them cope with their transplant.

  • It is advisable to hold a workshop or introductory meeting with transplant recipients who previously underwent the same organ transplant and had a successful experience of coping and a high quality of life; such an encounter would allow the new transplant recipient to learn strategies for coping with post-transplant life.

  • The transplant recipient’s desire for confidentiality must be respected, and measures must be taken to prevent the disclosure of their transplant to other people and/or acquaintances in their social network.

In conclusion, the type of transplanted organ and psychosocial factors may have a crucial impact on organ recipients' HRQOL.

It is our hope that the findings of the present research project will guide professionals in designing and providing help and support for organ transplant recipients in order to improve their health-related quality of life.