Quality of life and emotional responses in cadaver and living related renal transplant recipients

Konstadina Griva, Jochen P. Ziegelmann, Derek Thompson, Dakshina Jayasena, Andrew Davenport, Michael Harrison and Stanton P. Newman

Unit of Health Psychology, Department of Psychiatry and Behavioural Sciences, University College London, London, UK



   Abstract
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 
Background. The specific impact of transplantation on living related donor (LRD) and cadaver (CAD) kidney transplant recipients and their health-related quality of life (HQoL) has received little attention. This study examined the role of sociodemographic, medical and psychological factors in these two groups.

Methods. A total of 347 transplant recipients (76 LRD and 271 CAD patients) completed the Short Form 36 Health Survey and Transplant Effects Questionnaire.

Results. Overall, transplant patients showed satisfactory HQoL particularly with respect to emotional well being. HQoL levels were found to be equivalent in both transplant groups. ANCOVAs showed that LRD recipients expressed more guilt in relation to the donor (P<0.001). Multivariate analysis revealed that worry about the viability and functioning of the transplant alone predicted 15.1% of the variance in the SF-36 mental composite score (MCS) whereas age, income, comorbidities and time on dialysis explained 37.8% of the variance in the SF-36 physical composite score (PCS). Multiple regression analyses performed separately for LRD and CAD patients showed that predictors of MCS and PCS between the two groups were similar.

Conclusions. Our results indicate that different forms of transplantation (LRD vs CAD) may lead to different emotional responses albeit with no apparent quality of life differences. In particular, feelings of guilt appear to be prominent in LRD transplantation.

Keywords: cadaver; living related donor; psychological factors; quality of life; renal transplantation



   Introduction
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 
Renal transplantation is generally accepted as the optimal treatment for most patients with end-stage renal disease (ESRD). The benefits of renal transplantation have usually been described in terms of a better quality of life [1], reduced medical expenses [2] and prolongation of life [3,4].

The outcomes of renal transplantation have improved with the use of cyclosporin with significant improvements in graft and patient survival rates [5]. In the UK, 15% of all renal transplants are from living related donors (LRDs) [6]. LRD transplants have been considered to offer a number of advantages over cadaver (CAD) kidney transplants, in particular the reduction in both warm and cold ischaemia times. In addition, the elective nature of the surgery allows a more complete evaluation and preparation of the recipient and donor so the transplant operation can be performed when donor's and recipient's health and preparation for transplantation is optimal. It may permit a shorter delay between starting dialysis and transplantation and also a chance to avoid the potential negative consequences and medical risks of chronic dialysis [7]. More importantly, the clinical outcomes of kidney transplantation such as graft and recipient survival rates have been found to be substantially better when organs are from either related or unrelated living donors [5,8,9] such that receiving a kidney from a LRD confers up to 7% increase in survival in Europe [10].

In contrast to the abundance of research on the clinical outcomes of CAD and LRD transplantation, consideration of other relevant outcomes in relation to transplant source has been less extensive. The patients' health-related quality of life (HQoL) has been considered to be a treatment goal in addition to survival [11]. Numerous studies have examined HQoL in kidney transplant patients either in comparison to dialysis or prospectively pre- and post-transplantation [12]. There is ample evidence in support of the relatively higher HQoL associated with transplantation relative to dialysis treatments [1,1315]. Very few studies, however, have systematically investigated HQoL in LRD compared with CAD transplant recipients. The two studies that have made this comparison on global quality of life and health status indicators (e.g. life satisfaction and functional ability) reported no differences between the two transplant groups [16,17].

The transplant literature has also highlighted that the receipt of a new kidney may give rise to a new set of stressors, psychosocial challenges and adaptive demands [18]. These include the need to adhere to a post-transplant regimen with all the potential medication side effects [19,20]. Also, closely related are the specific emotional responses associated with receiving a transplant. These range from mild anxiety or worry regarding the viability of the graft, to ‘extreme’ cases of more pervasive fear of rejection [21]. Emotions related to the act of donation, including feelings of gratitude, indebtedness and guilt towards the donor or the donor family, are also frequently reported by transplant recipients [22,23]. These specific emotional and behavioural responses to transplantation and the mode of transplantation (LRD vs CAD), may impinge upon HQoL.

The present study was designed as a systematic evaluation of HQoL, and emotional and behavioural processes in LRD and CAD transplant recipients. The primary aims of this study were (i) to compare HQoL and emotional adjustment in CAD and LRD transplant recipients and (ii) to identify sociodemographic and psychological factors that are associated with HQoL in patients with a functioning renal transplant.



   Subjects and methods
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 
Participants
The study was conducted at the Royal Free Hospital and Middlesex Hospital in London, UK from October 1998 to October 1999. Following ethical approval, transplant patients treated in the two renal units were invited to participate. Inclusion criteria included age over 16 years, a minimum of 3 months since transplant operation, not being concurrently hospitalized or treated for rejection or infection episodes, and fluency in written and spoken English. Out of 453 patients contacted, 347 patients consented to the protocol (response rate=76.6%). The recruited sample consisted of 54.4% males, with a mean age 46.8 (13.95) years and a mean of 8.6 (6.55) years since their transplant. Approximately 25% (n=75) had received their transplant from a LRD.

Measures
Participants' medical records were reviewed to obtain information about previous dialysis and transplant history, time with the current transplant, type of donor, relationship to LRD, primary kidney disease diagnosis and comorbidity (intercurrent non-renal comorbidity). The presence/absence of eight of the most common comorbid disorders (plus an ‘other’ category) was recorded. These included diabetes mellitus, hypertension, ischaemic heart disease, peripheral vascular disease, cerebrovascular disease, cancer, bone diseases and chronic obstructive airways disease.

Transplant Effects Questionnaire (TxEQ) [24]
This 23-item questionnaire was specifically developed to measure the emotional and behavioural responses considered important to transplant recipients. The TxEQ contains five sub-scales that assess worry about the transplant (six items; e.g. ‘I am worried about damaging my transplant’), feelings of guilt towards the donor (five items; e.g. ‘I feel guilty about having taken advantage of the donor’), disclosure of transplantation (three items; e.g. ‘I avoid telling other people that I have a transplant’), medication adherence (five items; e.g. ‘sometimes I forget to take my anti-rejection medicines’), and perceived responsibility to do well (four items; e.g. ‘I think that I have a responsibility to the transplant team to do well’). The questionnaire comprises 24 items, presented in a mixed order and rated by the participants on a five-point Likert scale ranging from ‘strongly disagree’ to ‘strongly agree’ (scored from 1 to 5). Subscale scores are expressed as a mean by dividing the total score by the number of items, hence ranging from 1 to 5. Higher scores signify more worry about the transplant, more guilt, more disclosure, more perceived responsibility, respectively, and greater adherence. The questionnaire has data to support its internal structure and factorial validity and has been found to have acceptable internal consistency, test–retest reliability and face validity [24].

Short Form Health Survey (SF-36)
HQoL was measured with the 36-item Medical Outcome Study Short Form Health Survey [25]. The UK version 2 of the SF-36 was used to ensure face validity and maximize acceptability in British participants [26]. The SF-36 is a generic multidimensional measure of HQoL that contains eight sub-scales representing physical functioning (PF), social functioning (SF), role limitations due to physical health problems (RPh), role limitations due to emotional problems (REm), mental health (MH), vitality (VT), bodily pain (BP) and general health perceptions (GH). Sub-scale scores were transformed to 0–100 scales with higher scores indicating better HQoL. Subsequently the scale scores were standardized to the scale scores of a general UK population sample (n=8889, age range 18–64 years, 43.4% were male) by subtracting the general population mean from the individual mean and dividing by the corresponding scale SD from the general population. The resulting so-called standard score or Z-score indicates how many SDs the observed SF-36 scores of dialysis or transplant patients fall below or above the scores of the reference population when the scores of the reference population are set to 0. To facilitate interpretation and comparisons to the norms, normative-based scoring was used [27]. Normative-based scoring involves a linear t-transformation to ensure that all SF-36 sub-scales and composite scores had a mean of 50 and a SD of 10 in the general UK population. The physical and mental components of the eight scales were combined into a physical composite score (PCS) and a mental composite score (MCS) [28]. The SF-36 has been proved reliable and valid in various demographic and patient populations including ESRD and transplant patients [29].

Work status/vocational rehabilitation
Work rehabilitation as indexed by perceived ability to work and current work status, is considered to be an objective indicator of HQoL since it may be seen as reflecting physical status/abilities. Current work status was measured by an item asking participants to indicate whether they were at the time employed full-time, part-time, retired, unemployed or looking after home and family. Perceived ability to work was assessed by a single question developed by Evans et al. [13]: ‘are you now able to work full time, part time, or not at all?’

Data analysis
Sociodemographic and medical differences between CAD and LRD patients were examined using independent t-tests for continuous variables or chi-square analysis for categorical data. Analyses of covariance, ANCOVAs, were used to investigate the effect of transplant type on the HQoL domains and TxEQ sub-scales. Intercorrelations among study variables were examined using Pearson's correlation coefficient (when variables were not normally distributed Spearman's correlations were applied). Univariate relationships between independent variables (sociodemographic, clinical and psychological) on the one hand, and SF-36 scores on the other, were assessed using independent t-tests, ANOVAs, Pearson R correlations or where appropriate their non-parametric equivalents. All significant variables (set at P<0.1) identified from univariate analysis were included in the hierarchical multiple regressions using the forward method and a level of P<0.05 as an entry criterion. All these analyses were performed on the combined sample and separately for each transplant type group. Independent variables entered the regression equations in a specified order: (i) sociodemographic factors (i.e. age, gender), (ii) clinical variables (i.e. comorbidities), and (iii) psychological variables.



   Results
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 
Sociodemographic and medical characteristics of the CAD and LRD transplant patients are shown in Table 1Go. Age, annual income and time spent on dialysis differed significantly between the two groups. LRD transplant recipients were younger (mean 40.37 years, SD 11.93) than CAD transplant patients (mean 48.59 years, SD 14.03) [F(1, 340)=21.37, P<0.001], reported higher annual income ({chi}2=11.04, P=0.014) and had spent significantly less time on dialysis prior to their transplant (mean 17.07 months, SD 24.94) than CAD transplant patients (mean 37.88 months, SD 40.78) [F(1, 296)=16.04, P<0.001]. The difference in time on dialysis was anticipated given the elective nature of LRD transplantation that allows shorter delay between dialysis and transplantation. In subsequent comparisons between the two groups these differences were controlled statistically.


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Table 1.  Participants' sociodemographic and clinical characteristics

 
The effects of transplant type
ANCOVA (covarying for age, income and dialysis duration) revealed a significant transplant type effect on one study outcome (Table 2Go). [Reported degrees of freedom vary due to missing data. Missing data ranged from 5 (n=18) to 12.3% (n=44) in SF-36 and TxEQ. This was mainly due to patients' missing individual questionnaire items so the total HQoL and TxEQ scores could not be computed. A considerable number of transplant respondents refused to disclose details of annual income (n=80, 22.3%) (by ticking appropriate ‘do not wish to answer’ option) and hence this has produced more missing data.] LRD transplant patients expressed significantly stronger feelings of guilt towards the donor (mean 2.70, SD 0.80) relative to CAD transplant recipients [mean 2.05, SD 0.63; F(3, 200)=26.27, P<0.001]. There was a tendency for LRD patients to be more reluctant to disclose or talk about their transplant experience (mean 4.03, SD 0.85) relative to CAD transplant counterparts [mean 3.68, SD 1.10; F(3, 207)=3.58, P=0.06]. There was no significant difference in reported levels of worry with regard to transplant, with both groups being equally concerned with the viability and functioning of their graft.


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Table 2.  HQoL and emotional responses of CAD and LRD transplant patients (means and SDs)

 
HQoL levels as measured by the eight SF-36 sub-scales were found to be similar in both LRD and CAD transplant recipients. Group mean scores in all sub-scales were all within 1 SD of those reported for the general population as were the SF-36 PCS and MCS. The number of individuals who could be considered to have severely impaired HQoL, defined as a composite HQoL score (PCS or MCS) of 2 or more SDs below the general population mean (corresponding to the lowest 2.5% scoring of the general population), was calculated. Using this criterion, 22.6% (n=79) of the total transplant sample (24.5% of CAD patients, n=67 and 15.8% of LRD patients, n=12) were found to be severely impaired on the PCS. In contrast, only 10% of transplant respondents (11.8% of LRD patients, n=9 and 9.5% of CAD patients, n=26), had MCS scores that were similarly impaired. These findings suggest that for a proportion of individuals emotional well being remains uncompromised despite the severely affected physical HQoL. Chi-square analysis showed that the incidence of physical HQoL impairment was greater in CAD than LRD patients ({chi}2=7.627, P=0.022). MCS impairment incidence was similar between the two transplant groups.

A significant association was also noted between transplant type and work status indices. There were significant differences between the two transplant groups in perceived ability to work and current employment status (Table 1Go). More LRD patients were in full- or part-time employment (n=55, 75.3%) compared to CAD patients (n=138, 50.5%) ({chi}2=13.07, P<0.001). Moreover, a larger proportion of LRD patients considered themselves as able to work full- or part-time (n=60, 82.2%) than CAD patients (n=175, 66%) ({chi}2=7.05, P=0.008). These differences are more likely to be due to the significant age differences observed between the two groups rather than being attributed to transplant type. Regardless of their transplant source, more patients perceived themselves as able to work either full- or part-time than were actually working (n=235, 69.5% vs n=193, 56.8%).

Associations between variables
Correlational analysis between sociodemographic, medical variables and TxEQ sub-scales showed that increasing age was associated with less worry regarding the transplant (r=-0.25, P<0.001), less guilt (Spearman's rho=-0.14, P=0.012), higher adherence to immunosuppressive medication (rho=0.24, P<0.001) and more perceived responsibility to do well (rho=0.28, P<0.001). In addition, the number of comorbid conditions was positively correlated with more disclosure (rho=0.17, P<0.001).

Significant, albeit weak associations, were also found between the five TxEQ sub-scales suggesting links between emotional and behavioural aspects of post-transplantation adjustment. Stronger feelings of guilt were significantly correlated with more worry about the transplant (rho=0.25, P<0.001), higher perceived responsibility (rho=0.19, P=0.001), lower disclosure (rho=-0.24, P<0.001), and poorer medication adherence (rho=-0.20, P<0.001). Worry about the transplant also correlated with feelings of greater responsibility to do well (rho=0.21, P<0.001) and less disclosure about the transplant (rho=-0.14, P=0.013).

Factors associated with HQoL
Univariate analyses showed several significant associations between HQoL and sociodemographic and psychological variables (Table 3Go).


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Table 3.  Correlations between SF-36 sub-scalesa and psychological and sociodemographic variables in the combined transplant sample

 
The physical dimensions of SF-36 were strongly associated with age, with scores deteriorating as a function of age (Spearman's correlation coefficients, rho, ranging from -0.14 to -0.42). Interestingly, age was also found to be positively, albeit weakly, associated with emotional well being, i.e. higher MCS scores (r=0.17, P=0.003)

Annual income was also associated with the HQoL, particularly physical well being. ANOVA comparisons between patients on the four different income groups indicated that transplant patients on the lowest income brackets (i.e. earning<£10 000 per year) had significantly poorer HQoL, as indexed by lower scores on PCS [F(3, 230)=23.59, P<0.001], PF [F(3, 243)=24.44, P<0.001], BP [F(3, 242)=16.34, P<0.001], RPh [F(3, 242)=22.33, P<0.001], GH [F(3, 241)=4.76, P=0.003], SF [F(3, 243)=9.50, P<0.001] and REm [F(3, 240)=8.01, P<0.001] than patients with higher incomes. No systematic differences were found between the three higher income groups.

An increasing number of comorbid conditions correlated with decreasing HQoL scores in eight of the 10 SF-36 sub-scales. Correlation coefficients, rho, ranged from -0.16 to -0.44 (Table 3Go). Ischaemic heart disease, in particular, was associated with lower scores (i.e. poorer HQoL) in PCS (U=3625, P<0.001), PF (U=4121, P<0.001), RPh (U=4456, P=0.002), GH (U=4691, P<0.003), BP (U=4606, P=0.001) and REm (U=4956, P<0.02). Diabetes mellitus was also found to be associated with lower scores in PCS (U=2353, P<0.001), PF (U=2714, P<0.001), RPh (U=2662, P<0.001), BP (U=3410, P=0.05) and SF (U=3158, P=0.02). As expected, longer times spent on dialysis were associated with lower scores on the PCS and poorer scores on some physical sub-scales (physical functioning, role limitations due to physical problems and pain) of the SF-36 (Table 3Go).

Among the psychological variables, worry about the transplant was consistently correlated with all the psychosocial dimensions of SF-36 and some of the physical SF-36 scores (such as RPh, BP, GH and VT). Guilt correlated with mental health, role limitations due to emotional problems and social functioning, and disclosure correlated only with mental health (Table 3Go). Higher scores in the psychological dimensions of SF-36 (MCS, MH, REm) correlated with better medication adherence.

To examine which variables accounted for the variance in the physical and mental HQoL in a multivariate analysis, hierarchical multiple regression analyses were conducted. The variables selected for these analyses were those significantly associated in the univariate analyses. The results indicated that age, income, comorbidity and time spent on dialysis prior to transplantation were significant multivariate predictors of the PCS of the SF-36 in the total transplant sample, accounting for 37.8% of the variance (Table 4Go).


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Table 4.  Hierarchical multiple regressions models to predict physical and mental quality of life in transplant patients: cumulative explained adjusted variance (Adj. R2) and standardized regression coefficients (ß)

 
The regression model to predict MCS in the combined transplant sample explained 15.1% of the variance with only worry about the transplant being significant (Table 4Go). The relatively little success in predicting MCS suggests that factors other than those assessed may be more important.

Multiple regressions were also performed separately for the two transplant groups. In LRD patients, age (ß=-0.541, P=0.0032), income (ß=0.692, P<0.001), time spent on dialysis (ß=0.402, P=0.0124) and worry about the transplant (ß=-0.381, P=0.021) explained a large amount (50.5%) of the variance in PCS. In contrast, for CAD patients, significant predictors of PCS were age (ß=-0.245, P<0.001), income (ß=0.298, P<0.001), number of co-morbid conditions (ß=-0.302, P<0.001), and time spent on dialysis (ß=-0.153, P=0.03), accounting for 35.8% of the variance. In the regression equations to predict MCS, only worry about the transplant was a significant predictor, explaining alone 17.9 and 17.4% of the variance in MCS for LRD and CAD transplant patients, respectively.



   Discussion
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 
The present study was designed to examine and compare the emotional responses and quality of life of those receiving renal transplants from LRDs and CAD donors. After controlling for sociodemographic and clinical case mix differences between the two groups, different emotional responses were found. In particular, feelings of guilt were found to be more prominent in LRD transplant recipients irrespective of recipients' age, time elapsed since transplantation, time on dialysis and income. The significantly higher levels of guilt reported by LRD recipients are understandable given the different relationship between the transplant recipients and donor and their family [30] and the recognition of the sacrifice made by the donor. Most LRD kidney transplant recipients continue to have a relationship with the donor and in this study all donors were relatives of the recipients. The sacrifice made by the donor, the physical cost of donation and the perceived ongoing risk of having only one kidney may understandably lead to feelings of guilt. Although their incidence rates are very low both early post-operative as well as later risks are attached to living donor transplantation [31]. It is likely that transplant recipients will be very well aware of these risks [32]. Recipients of CAD transplantation do not have any pre-existing relationship with the donor or his/her family and the prospect for future personal contact was limited, given the current practice in the UK of discouraging or prohibiting direct contact between CAD transplant recipients and donor families. Even in cases where some contact, typically in the form of correspondence, is established between CAD recipients and donor families, this form of interaction tends to be more impersonal and exclusively regulated via the transplant co-ordinating centres. Although the recipient of a LRD kidney may well have increased levels of guilt and there have been some reports of depression and disrupted family relationships after donation to a family member [33], most published reports have indicated an improved sense of well being, quality of life and a boost in self-esteem for living kidney donors [34,35].

The findings on HQoL were consistent with those reported by Evans et al. [16] and Julius et al. [17] in that HQoL appears to be unaffected by transplant type. Both LRD and CAD transplant recipients reported equivalent HQoL levels in all SF-36 sub-scales with mean scores for both groups being within 1 SD of the mean of a normal population. This finding is reassuring and further documents the great attractions of renal transplantation as a mode of treatment that largely restores individuals' HQoL. The mean scores of the group do, however, mask the fact that a substantially high number of transplant patients (n=79, 22.6%) have a PCS on the SF-36 which was severely impaired, being more than 2 SDs below the general population mean. Such a score corresponds to the 2.5th percentile of the distribution of HQoL scores in the general population. This finding indicates that even though mean scores were all close to that of the population, 22% of the 349 patients assessed reported significant limitations in all physical activities, such as walking or climbing stairs, were severely bothered by pain and rated their health as poor. This finding may have clinical implications as poor HQoL has been found to be independently associated with poorer outcomes such as increase in mortality and hospitalization rate [36,37].

In keeping with previous research on the general population, increased age was associated with poorer physical capacity [25]. The other main indicators of reduced physical capacity in our transplant groups were the number of comorbid conditions, longer time spent on dialysis and income [15,38]. In contrast, these factors did not affect mental health indicators of quality of life. The emotional well being scores of the SF-36 (MCS) were more strongly associated with psychological variables (TxEQ sub-scales). Although the differences between LRD and CAD recipients were not manifest in HQoL, the emotional responses to the transplant did affect the quality of life. Feelings of guilt, a tendency not to disclose the transplant and worry about the viability of the transplant were associated with the mental components of the SF-36 on univariate analysis. In particular, overall worry about the transplant appears to be a key determinant of individuals' emotional well being following transplantation in both TX groups. Worry about the transplant was also found to be associated with physical well being in LRD patients. It is important to recognize that these emotional responses, which are specific to transplantation are not assessed by traditional quality of life instruments but do have broader ramifications. Importantly, they are issues which have the potential to be addressed in clinical care.

It should be recognized, however, that despite the observed significant associations between psychological factors and mental HQoL in the regression analysis, a large proportion of the variance in HQoL remained unexplained. Numerous factors not measured in this study are likely to impinge upon HQoL in this population. For instance, the side effects of immunosuppressive medication and the resultant distress have been associated with decreases in HQoL among transplant recipients [39]. The levels of social support received have also been found to be important in many chronic illnesses and to predict HQoL in transplant recipients [14]. HQoL is a multidimensional concept and predictors are likely to be multiple and varied.

In conclusion, renal transplantation imparts HQoL levels comparable to that of the normal population but it also raises new concerns. Feelings of guilt towards the donor, and donor's family, a tendency not to disclose that they have received a transplant, and worry about the viability of the transplant, were reported by the majority of renal transplant participants. Guilt appears to be more pronounced in LRD transplant recipients. The study emphasizes the value of using transplantation-specific measures sensitive enough to capture the emotional concerns and worries of transplant recipients and further suggests that feelings of guilt and worry may be an appropriate focus for interventions to bolster patients' emotional adjustment to transplantation.



   Acknowledgments
 
This research was supported by a grant from Alexandros Onassis Foundation to K.G., a scholarship from the German Academic Exchange Service (DAAD) to J.P.Z. and the R.L. Weston Institute for Neurological Studies of the UCL Medical School, which are gratefully acknowledged.



   Notes
 
Correspondence and offprint requests to: Professor Stanton P. Newman, Unit of Health Psychology, Department of Psychiatry and Behavioural Sciences, University College London, Wolfson Building, 48 Riding House Street, London W1N 8AA, UK. Email: s.newman{at}ucl.ac.uk Back



   References
 Top
 Abstract
 Introduction
 Subjects and methods
 Results
 Discussion
 References
 

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Received for publication: 28. 9.01
Accepted in revised form: 16. 8.02