Financial, Vocational, and Interpersonal Impact .... in the program are seen for clinic follow-up at 2 ... donors17,18 and over 8 years of clinical experience eval-.
LIVER TRANSPLANTATION 15:1435-1442, 2009
ORIGINAL ARTICLE
Financial, Vocational, and Interpersonal Impact of Living Liver Donation Susan Holtzman,1* Lesley Adcock,2 Derek A. Dubay,2 George Therapondos,2 Arash Kashfi,2 Sarah Greenwood,3 Eberhard L. Renner,2 David R. Grant,2 Gary A. Levy,2 and Susan E. Abbey3,4 1 Department of Psychology, University of British Columbia, Okanagan, Kelowna, BC, Canada; 2Liver Transplant Unit, Multi-Organ Transplant Program, Toronto General Hospital, University Health Network, Toronto, Ontario, Canada; 3Transplant Psychiatry Unit, Multi-Organ Transplant Program, and 4Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada
The ability to inform prospective donors of the psychosocial risks of living liver donation is currently limited by the scant empirical literature. The present study was designed to examine donor perceptions of the impact of donation on financial, vocational, and interpersonal life domains and identify demographic and clinical factors related to longer recovery times and greater life interference. A total of 143 donors completed a retrospective questionnaire that included a standardized measure of life interference [Illness Intrusiveness Rating Scale (IIRS)] and additional questions regarding the perceived impact of donation. Donor IIRS scores suggested that donors experience a relatively low level of life interference due to donation [1.60 ⫾ 0.72, with a possible range of 1 (“not very much” interference) to 7 (“very much” interference)]. However, approximately 1 in 5 donors reported that donating was a significant financial burden. Logistic regression analysis revealed that donors with a psychiatric diagnosis at or prior to donation took longer to return to their self-reported predonation level of functioning (odds ratio ⫽ 3.78, P ⫽ 0.016). Medical complications were unrelated to self-reported recovery time. Multiple regression analysis revealed 4 independent predictors of greater life interference: less time since donation (b ⫽ 0.11, P ⬍ 0.001), income lower than CAD$100,000 (b ⫽ 0.28, P ⫽ 0.038), predonation concerns about the donation process (b ⫽ 0.24, P ⫽ 0.008), and the perception that the recipient is not caring for the new liver (b ⫽ 0.12, P ⫽ 0.031). In conclusion, life interference due to living liver donation appears to be relatively low. Donors should be made aware of risk factors for greater life disruptions post-surgery and of the potential financial burden of donation. Liver Transpl 15:1435-1442, 2009. © 2009 AASLD. Received March 22, 2009; accepted May 26, 2009.
Living donor liver transplantation is one of the solutions used to address the scarcity of deceased organs and offers recipient survival rates comparable to those offered by cadaveric transplantation.1,2 Prospective donors undergo extensive medical and psychosocial evaluations and are provided with information to enable them to give informed consent. Ideally, potential donors should be provided with specific data regarding the medical and psychosocial risks of donation (eg, financial strain and interpersonal conflict). The medical risks of living donation were outlined in the Adult-to-Adult
Living Donor Liver Transplantation Cohort Study, in which there was a complication rate of 38% and a mortality rate of 0.8%.3 However, our ability to provide detailed information regarding the psychosocial risks of donation is limited because of the scant empirical literature on this subject. The majority of studies assessing psychosocial outcomes of living liver donors have used standardized measures of health-related quality of life (HRQOL), such as the Short Form (36) Health Survey,4 to assess donors’ global mental and physical well-being following
Abbreviations: HRQOL, health-related quality of life; IIRS, Illness Intrusiveness Rating Scale; PBC, primary biliary cirrhosis; PSC, primary sclerosing cholangitis. This research was supported by the Women’s Health Scholars Award from the Ontario Council on Graduate Studies and by the Rev. Dr. R. Stuart and Marion Johnston Fellowship in Women’s Health Research (both to S. Holtzman). Partial funding for this project came from a grant from the University Health Network Psychiatric Consultants (to S. E. Abbey). Address reprint requests to Susan Holtzman, Ph.D., Department of Psychology, University of British Columbia, Okanagan, Kelowna, BC, Canada V1V 1V7. Telephone: (250) 807-8730; Fax: (250) 807-8001. E-mail: susan.holtzman.ubc.ca DOI 10.1002/lt.21852 Published online in Wiley InterScience (www.interscience.wiley.com).
© 2009 American Association for the Study of Liver Diseases.
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donor surgery. Findings typically suggest that donors experience a postdonation HRQOL that is as high as, or higher than, that of the general population.5-7 Although results from these global HRQOL studies are encouraging, they do not provide specific information regarding how donors perceive the impact of the donation process on their daily lives. A small number of prior studies have examined the perceived impact of live liver donation on financial, vocational, and interpersonal life domains, but the sample sizes have typically been small (ie, fewer than 50 liver donors), and the questions have been designed specifically for the purposes of each study; this makes cross-study comparisons difficult.5,8-10 Economic concerns have been highlighted as a major source of stress among potential and actual liver and kidney donors.9,11 Despite calls to reduce the financial disincentives of live organ donation,12 little is known about the specific nature and magnitude of costs incurred by donors and the extent to which income may affect donor well-being post-hepatectomy. The extent to which donation affects the donor-recipient and donor-spouse relationships has also been examined in several studies,6,8,10 but most have failed to assess the impact of donation on other social relationships and the factors associated with negative relationship outcomes. The goal of the current cross-sectional study was to assess the perceived impact of living liver donation on financial, vocational, and interpersonal life domains in a large cohort of consecutive donors. To date, no studies have investigated risk factors for greater life interference due to live organ donation. Therefore, using a standardized measure of life interference, we sought to identify demographic (eg, sex, age, and income) and donation-specific factors (eg, surgical complications and recipient outcomes) associated with longer recovery times and perceived life interference following donation.
PATIENTS AND METHODS Study Design This was a cross-sectional study in which donors who were at least 3 months post-donation were mailed a package of materials containing a cover letter explaining the study objectives, a consent form, and a written questionnaire. This was part of a larger study designed to assess long-term donor HRQOL. Only those measures that were analyzed in this report are described here (other HRQOL measures have been reported elsewhere7). Ethics approval for this study was obtained from the Research Ethics Board of the University Health Network (Toronto, Canada). All participants provided written informed consent.
Participant Recruitment A total of 204 donors who underwent right hepatectomy at Toronto General Hospital between April 2000 and March 2007 were mailed a letter requesting participation in the current study, along with a consent form and
a written questionnaire. Donors whose recipients had died were sent a modified questionnaire to reflect the status of their recipient. Eleven donors who had been lost to follow-up were not contacted. Of note, donors in the program are seen for clinic follow-up at 2 weeks, 1 month, 3 months, and 12 months and then annually. One hundred forty-five donors returned the study questionnaires, and 143 had sufficient data to be included in the present analyses (70% response rate). Individuals who completed the study questionnaires were significantly more likely to be female (P ⬍ 0.05) and older at the time of donation (P ⬍ 0.01). Responders and nonresponders did not differ in terms of time since donation, donor in-hospital or postdischarge surgical complications, or recipient death (all P values ⬎ 0.10).
Procedure Donors completed a battery of questionnaires assessing demographics, experiences with the donation process, and overall HRQOL. A medical chart review was conducted to obtain information regarding time since donation, past or present Axis I psychiatric disorders at the time of donor workup, in-hospital surgical complications, postdischarge surgical complications, primary cause of recipient’s liver failure, and recipient death.
Questionnaire Measures Perceived Impact of Donation Donors completed the Illness Intrusiveness Rating Scale (IIRS),13 a 13-item scale assessing the extent to which the donation interfered with various aspects of their lives at that point in time. Each item was rated on a 7-point Likert scale, which ranged from 1 (not very much interference) to 7 (very much interference). The IIRS yields a total score and the following 3 subscale scores: (1) relationships and personal development (family relations, other social relations, passive recreation, self-expression/improvement, religious expression, and community/civic involvement), (2) intimacy (relationship with partner and sex life), and (3) instrumental life (health, work, active recreation, and financial situation). The IIRS has been used across a number of patient populations, including end-stage organ failure and transplant recipients,14 and has demonstrated good validity and reliability in past research.15 Donors were also asked a series of questions not covered in the IIRS regarding the specific impact of donation on their financial and employment situation and social relationships. These questions were developed for the purposes of the current study and were based on previous studies of living kidney16 and liver donors.10
Predonation Motivations and Concerns Motivations and concerns about donating were assessed retrospectively with 13 items generated by a
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multidisciplinary panel based on previous theoretical and empirical work on prospective kidney and liver donors17,18 and over 8 years of clinical experience evaluating potential live donors. Donors indicated how important each issue was at the time they decided to donate using a scale ranging from 1 (not relevant) to 5 (very important). Items were grouped to form 4 conceptually distinct categories: 1. Predonation motivations: To improve recipient health (eg, “wanting to save the life of the recipient”). 2. Predonation motivations: To be a Good Samaritan (eg, “wanting to feel that I am a good person”). 3. Predonation concerns: Self-related (eg, “fear that giving up part of my liver might damage my health or cause me problems in the future”). 4. Predonation concerns: Recipient-related (eg, “worry that the person I was donating a part of my liver to might not take care of it properly”).
Postdonation Perceptions of Recipient Health On a scale ranging from 1 (strongly disagree) to 5 (strongly agree), donors indicated whether they thought their recipient currently enjoyed good health and whether the recipient behaved in a way that could risk the continued healthy functioning of the donated liver.
Statistical Analysis First, descriptive statistics were used to examine donor recovery time, donor IIRS scores, and other survey questions regarding the financial, vocational, and interpersonal impact of donation. Next, a series of bivariate analyses (chi-square statistics, 1-way analyses of variance, and independent t tests) were conducted to determine predictors of donor recovery time and donor IIRS scores. Nonparametric statistics were employed when variables violated assumptions of normality. The following were tested as potential predictors: donor demographics [gender, age, marital status, family income, education, and Axis I psychiatric diagnosis at donation (past or present)], donation-specific characteristics [length of hospital stay (⬎7 days), in-hospital complications (Clavien grade II or higher),19 postdischarge complications (Clavien grade II or higher), time since donation, recipient death, recipient hepatitis C diagnosis, and recipient status as a non–first-degree relative], and donor perceptions of the donation process [predonation motivations and concerns and postdonation perceptions of recipient health]. Because of the exploratory nature of these analyses, factors that were related at P ⬍ 0.10 in the bivariate analyses were included in multivariate analyses to determine independent predictors of study outcomes. Multiple logistic and linear regressions with backward elimination (using P ⬍ 0.05 for retention in the model) were used to predict donor recovery time and IIRS scores, respectively.
TABLE 1. Donor Demographics and DonationSpecific Characteristics (n ⫽ 143) Characteristic
Number (%)
Sex, female 74 (52) Age [mean ⫾ standard deviation (range)] 42 ⫾ 12 (20-66) Caucasian 108 (76) Married/common-law 88 (62) At least high school education 140 (98) Employment status Full-time 105 (73) Part-time 16 (11) Retired 10 (7) Not working by choice 4 (3) Not working because of donor surgery 1 (1) Annual family income (CAN$) ⬍$25,000 18 (13) $25,000-$68,000 53 (38) $68,001-$99,000 33 (24) ⬎$99,000 33 (24) Relationship to recipient (donated to . . .) Parent 52 (36) Sibling 32 (22) Child 6 (4) Other biological relative 17 (12) Spouse 12 (8) Friend/coworker 13 (9) Other (including anonymous) 11 (8) Primary cause of recipient’s liver failure Hepatitis C 50 (35) Cholestatic (PBC/PSC) 35 (25) Alcohol 21 (15) Hepatitis B 9 (6) Other 28 (20) Time since donation 3-6 months 10 (7) 7-12 months 22 (15) 13-24 months 34 (24) 25-48 months 38 (27) ⬎48 months 139 (27) Abbreviations: PBC, primary biliary cirrhosis; PSC, primary sclerosing cholangitis.
RESULTS Sample The final sample consisted of 143 living liver donors (74 females and 69 males) who had donated a median of 27 months (range ⫽ 3-84) prior to completing the study questionnaire. A detailed description of donor demographics and donation-specific characteristics is presented in Table 1. At the time of donation, 24% of donors were smokers, and 15% were clinically obese (body mass index ⱖ 30 kg/m2). At donation, 18% had a past or present Axis I psychiatric disorder. Specifically, 8 donors had a present mood disorder, and 6 had an anxiety disorder. Several donors also had a known history of a mood disorder (n ⫽ 7), anxiety disorder (n ⫽ 3), and/or substance use disorder (n ⫽ 6). Fourteen donors had both past and present psychiatric disorders, and 1 donor had 2 past psychiatric disorders (but none
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Figure 1. Donor perceptions of the length of time required to return to the predonation level of functioning at home, work, or school (n ⴝ 143).
at donation). The median length of hospital stay was 7 days (range ⫽ 4-17). Twelve percent of donors experienced in-hospital complications that were Clavien grade II or higher, and 18% developed postdischarge complications that were Clavien grade II or higher. At the time of questionnaire completion, 11% of the donors’ recipients had died.
Recovery Time The majority of donors reported that they were able to return to their predonation level of functioning at work, home, or school within either 1 to 3 months (42%) or 4 to 6 months post-surgery (39%; Fig. 1). Three donors (2%) said they had not yet returned to their predonation level of functioning. These 3 donors were at least 6 months post-donation (7, 15, and 24 months post-donation) at the time they completed the study questionnaire.
What Predicts Donor Recovery Time? On the basis of bivariate analyses, donors who reported taking longer than 6 months to return to their predonation level of functioning at home, work, or school were significantly more likely to have had a psychiatric diagnosis at or prior to donor hepatectomy (P ⫽ 0.003) and tended to be more likely to have stayed in the hospital for over 7 days following surgery (P ⫽ 0.058). When both factors were entered into a multiple logistic regression model, only psychiatric diagnosis was significantly associated with recovery time (odds ratio ⫽ 3.78, 95% confidence interval ⫽ 1.29-11.10, P ⫽ 0.016).
Life Interference due to Liver Donation IIRS Scores The mean donor IIRS score was 1.60 ⫾ 0.72, and the score ranged from 1.00 to 3.69 [possible range of 1 (“not very much” interference) to 7 (“very much” interference)]. Two participants had IIRS scores that were ⬎3 standard deviations above the mean and were therefore excluded from the present analyses. Donor scores on the IIRS (total scores and the 3 subscale scores) were stratified with respect to the time since donation and were plotted to explore trends in illness intrusiveness over time (Fig. 2). IIRS total mean scores were highest at
Figure 2. Perceived interference of liver donation with various life domains over time. Values represent mean scores on the Illness Intrusiveness Rating Scale (IIRS), which consists of 3 subscales and the total score. A score of 1 represents “not very much” interference, and a score of 7 represents “very much” interference. The subscales include the following items: (1) relationships and personal development (family relations, other social relations, passive recreation, self-expression/improvement, religious expression, and community/civic involvement), (2) intimacy (relationship with partner and sex life), and (3) instrumental life (health, work, active recreation, and financial situation). The sample sizes for each group were as follows: n ⴝ 10 for 3 to 6 months, n ⴝ 22 for 7 to 12 months, n ⴝ 34 for 13 to 24 months, n ⴝ 38 for 25 to 48 months, and n ⴝ 39 for >48 months.
3 to 6 months post-donation (2.08 ⫾ 0.69) and appeared to level off among donors who were 25 to 48 months (1.33 ⫾ 0.45) and over 48 months (1.36 ⫾ 0.51) post-surgery. Across all time points, donors reported the greatest interference in the instrumental life domain (health, work, active recreation, and financial situation) and the least interference in their relationships and personal development (family relations, other social relations, passive recreation, self-expression/improvement, religious expression, and community/civic involvement).
Financial Impact Sixty-five percent of donors stated that the financial costs of donating were about what they expected. However, 21% stated that costs were more than expected, and 14% reported that costs were less than expected (Table 2). Nineteen percent of donors (n ⫽ 26) felt that organ donation was a significant financial burden on themselves and their family. Donor estimates of the financial costs related to donation varied widely. The median estimated out-ofpocket cost was CAD$3000, but the cost ranged from $0 to $70,000. Among donors who reported costs over $10,000, 79% had an income of over $68,000, and 50% experienced postdischarge complications. Hospital stays and in-hospital medications are covered by our universal healthcare system, including those related to postdischarge complications. However, not all outpatient costs are covered, and 39% of donors reported medical bills and drug costs (eg, Fragmin) not covered by universal healthcare or donors’ private insurance plans. Fifty-nine percent reported transportation costs (eg, parking and airfare), and 51% said that they had lost income. Other out-of-pocket costs incurred by do-
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TABLE 2. Donor Perceptions of the Financial Impact of Donation %* Cost of donation (compared to what was expected) About the same as expected More than expected Less than expected Donation was significant financial burden on the donor and donor’s family Total estimated cost of donation (CAD$; median ⫽ $3000) ⬍$1000 $1000-$5000 $5100-$10,000 ⬎$10,000 Financial benefits while unable to work† Short-term disability None Employment insurance Private insurance Trillium Gift of Life Network‡
65 21 14 19
25 46 17 12 38 33 16 6 2
*The following items were missing data: cost compared to what was expected (n ⫽ 13), financial burden (n ⫽ 5), total estimated costs (n ⫽ 35), and financial benefits (n ⫽ 7). Adjusted frequencies are presented. †Data are presented for the 126 donors who were employed full-time or part-time at the time of donation. One donor received 2 sources of benefits. ‡This is the organ and tissue agency for the province of Ontario, Canada, which reimburses eligible donors for loss of income.
nors included childcare, meals, and local accommodation. Of those who were employed at the time of donation, 33% of donors did not receive any financial benefits while they were unable to work.
Vocational Impact Of those who were employed or going to school at the time of donation, 96% reported that their workplace or school was supportive of their plan to donate. A total of 21 donors reported having to change or modify their work following donation, including 10 donors who reported changing to a job with less manual labor and 2 donors who reported working temporarily reduced hours. Other changes included having to relocate (n ⫽ 1), changing to a less stressful job (n ⫽ 1), and being laid off upon return to work (n ⫽ 1).
Interpersonal Impact Approximately half of donors (51%) indicated that the donation process improved or significantly improved their relationship with the recipient. Meanwhile, 45% reported no change, and 4% reported that their relationship was adversely affected. Among the 12 donors who had donated to their spouse, 64% (n ⫽ 7) reported a positive change in their marital relationship postdonation, 27% (n ⫽ 3) reported no change, and 9% (n ⫽
1) reported a change for the worse (1 donor did not respond to this question). The vast majority of donors reported either a positive change or no change in their relationships with their family (98%), spouse (94%), friends (99%), and coworkers (97%) following donation. Because of the small number of donors who reported adverse interpersonal outcomes, a formal statistical analysis of predictors of negative relationship outcomes could not be performed. However, factors that were hypothesized to be relevant to relationship outcomes (gender, age, time since donation, relationship to recipient, cause of recipient’s liver failure, psychiatric diagnosis, financial burden due to donation, surgical complications, and risky behavior by the recipient posttransplant) were examined through visual inspection of the data to provide guidance for future research. This informal inspection revealed that 4 of the 5 donors who reported an adverse relationship change with their recipient said they “agreed” or “strongly agreed” that their recipient behaved in a way that risked the new graft (80% versus 11% in the rest of the sample). These 5 donors also appeared to be younger than those without negative relationship outcomes (mean age of 32 versus 42 years), and 2 of the 5 donated to someone whose liver failure was caused by alcohol (40% versus 14% in the rest of the sample). No visible patterns were apparent among donors who reported negative relationship outcomes with their spouse (n ⫽ 8), family (n ⫽ 3), friends (n ⫽ 1), or coworkers (n ⫽ 4).
What Predicts Perceived Life Interference due to Living Donation? Preliminary analyses revealed that the predictors of the 3 IIRS subscales were virtually identical to the predictors of the IIRS total mean score. Therefore, for the sake of parsimony, only the results predicting total mean IIRS scores are presented here. On the basis of bivariate analyses, the following factors were found to be related to higher mean IIRS total scores (ie, greater life interference): obesity (P ⫽ 0.028), greater predonation motivations to be a Good Samaritan, (P ⫽ 0.019), greater predonation self-related concerns (P ⬍ 0.001), greater predonation recipient-related concerns (P ⫽ 0.003), and postdonation perceptions that the recipient was behaving in a way that might risk the healthy functioning of the new liver (P ⬍ 0.001; Table 3). The following variables were related to lesser life interference: older age (P ⫽ 0.011), longer time since donation (P ⬍ 0.001), being married (P ⫽ 0.05), and having an income greater than $99,000 (P ⫽ 0.022). When these factors were entered into a multiple linear regression analysis with backwards elimination, longer time since donation (b ⫽ ⫺0.11, P ⬍ 0.001) and having an income greater than $99,000 (b ⫽ ⫺0.28, P ⫽ 0.038) were significantly associated with less interference. Self-related predonation concerns (b ⫽ 0.24, P ⫽ 0.008) and the perception that the recipient was engaging in behaviors that might risk the new graft (b ⫽ 0.12, P ⫽ 0.031) were related to significantly greater interference.
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TABLE 3. Independent Predictors of Perceived Life Interference due to Liver Donation: Univariate and Multiple Linear Regression Analyses (n ⫽ 141) Bivariate P Value Demographic and donation-specific variables Time since donation (years) High income (⬎CAD$99,000) Age Married Obese (ⱖ30 kg/m2) Donor perceptions of donation process Predonation concern: Self-related Predonation concern: Recipient-related Predonation motivation: Good Samaritan Postdonation concern: Recipient risks new liver
Multiple Linear Regression* b
95% Confidence Interval
P Value
⬍0.001 0.022 0.011 0.05 0.028
⫺0.11 ⫺0.28 — — —
(⫺0.17,0.05) (⫺0.55,⫺0.02) — — —
⬍0.001 0.038 — — —
⬍0.001 0.003 0.019 ⬍0.001
0.24 — — 0.12
(0.06,0.42) — — (0.01,0.22)
0.008 — — 0.031
*Standardized betas are presented.
DISCUSSION This is the largest study to date investigating the perceived impact of living liver donation on the daily lives of donors and the first to examine psychosocial predictors of donor recovery time. Overall, donors reported a minimal level of life interference beyond 3 months postdonation, but the financial costs of donation were perceived to be burdensome for a substantial proportion of donors. The current study also highlights the importance of emotional and socioeconomic factors in predicting recovery from donation above and beyond surgical outcomes. Donors reported a mean IIRS score of only 1.60 ⫾ 0.72 [with a possible score of 1 (“not very much” interference) to 7 (“very much” interference)], and this indicates that donors experience a relatively low degree of life interference due to living donor liver transplantation after the initial 3 months. This adds to previous research suggesting that donors typically enjoy a level of physical and emotional well-being that is as high as, or higher than, that of the general population.5,6 Life interference was highest (but still minimal) among donors who were 3 to 6 months post-surgery and appeared to level off among donors who were over 2 years post-surgery. Not surprisingly, the area of greatest disturbance was in the instrumental domain of the IIRS (eg, health, work, and active recreation). Donor IIRS scores were also lower than IIRS scores previously reported for liver transplant recipients14 and patients 1 year after a cardiac event20 and similar to those of spouses of chronically ill patients.21 The majority of donors reported that they returned to their predonation level of functioning at work, home, or school within either 1 to 3 months (42%) or 4 to 6 months (39%) post-hepatectomy. This is consistent with past literature suggesting that donors require an average of 2 to 4.5 months to return to their predonation level of functioning.5,6,9,10,22-24 Multiple logistic regression analysis revealed that do-
nors who had a psychiatric diagnosis (mood, anxiety, and/or substance use disorder) at or before donation were significantly more likely to report needing more than 6 months to return to their predonation level of functioning. Specifically, 32% of those with a psychiatric diagnosis (versus 10% of the rest of the sample) reported a recovery time of over 6 months. Surprisingly, all other factors examined, including in-hospital and postdischarge medical or surgical complications, were unrelated to perceived recovery time. These observations suggest that (1) caution should be used when patients with a prior or present psychiatric diagnosis are accepted (although IIRS scores for this group were not significantly different from the scores of the rest of the sample), and (2) patients with a psychiatric history might benefit from more extensive psychosocial resources to expedite a full recovery. Financial issues emerged as a relevant factor for many donors post-surgery, and this is the first study to report on how donors’ expected costs of donation compare to their self-reported costs. Approximately 1 in 5 donors reported that the costs of donating were more than expected. A similar proportion of donors regarded the donation process as a significant financial burden to their family, and this is consistent with rates of financial burden found in live kidney donors.25 In terms of the actual financial costs related to the donation process, donors reported a median cost of CAD$3000. The wide range of reported costs ($0-$70,000) likely reflects variability in how donors calculated their expenses (eg, if they included lost wages), variability in donors’ insurance coverage for outpatient medical expenses, and the fact that donors with higher incomes tended to spend more over the course of the donation process. The magnitude of costs reported here is similar to that in other published reports of liver and kidney donors.6,10 Nonetheless, our results may underestimate the out-of-pocket costs and financial burden experienced by donors in countries without a universal
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healthcare system. Our findings highlight that prospective donors must be well-informed about the potential magnitude and nature of the costs that they may encounter in this process. We have revised our donor information package to provide the range of costs reported by patients. These data also reinforce the need to continue a recently implemented donor reimbursement program in the province of Ontario (implemented after the current study was conducted) and argue in favor of the need for similar programs across North America.12,26,27 Several donor characteristics, including financial status, emerged as significant independent predictors of life interference. However, it is worth noting that IIRS scores were relatively low across the entire sample, and although these characteristics were statistically significant predictors, they may not reflect clinically significant differences in distress. That being said, donors with an annual family income of at least $100,000 reported lower life interference due to the donation process. Not surprisingly, a greater length of time since donation was also associated with lower interference. Donors who reported having greater predonation concerns about the donation process (eg, concerns about their own health, finances, and disapproval from others) reported greater postdonation interference, and this suggests that predonation concerns be brought forth and addressed before donor surgery. However, the association between predonation concerns and reports of greater postdonation life interference may actually be due to a third underlying variable such as neuroticism (a stable personality trait characterized by a tendency to experience psychological distress).28 Similar to those with a psychiatric history, these individuals may require additional support from family, friends, and healthcare providers to assist them through the process, but exclusion from donating would not be warranted on the basis of the results given the (relatively small) magnitude of effects and lack of a prospective study design. Donors who believed that their recipient engaged in behaviors that risked the healthy functioning of the new graft also reported significantly greater disruption in various life domains. One possible explanation for this finding relates to the idea of cognitive dissonance.29 Donors have put themselves at a risk to take part in the donation process and are therefore likely to ignore or minimize evidence that suggests they may have made the wrong decision. However, when donors see that their recipients are not taking good care of their new organ, they may begin to question whether they made the right decision and more “openly and honestly” consider the negative impact of donation on their lives. This finding may also reflect situations in which recipients’ poor health behaviors are causing actual declines in recipient health and donors are spending more time and energy caring for their loved ones as a result. Not surprisingly, the extent to which donors perceived that their recipients engaged in risky behaviors also appeared to affect the quality of the relationship between donors and recipients post-transplant. Con-
sistent with past research,10,16,30 the majority of donors reported that the donation process improved or significantly improved their relationship with the recipient (51%) or that their relationship remained the same (46%). However, 5 donors reported a decline in their relationship with their recipient. Although statistical comparisons were not possible because of the low incidence of adverse relationship outcomes, a visual inspection of the data revealed that 4 of these 5 donors “agreed” or “strongly agreed” that their recipient behaved in a way that risked the new graft. Donors with negative relationship outcomes with their recipient also tended to be younger than those without negative relationship outcomes, and 2 of 5 donated to someone whose liver failure was caused by alcohol. Eight donors reported that their relationship with their spouse worsened or significantly worsened as a result of the donation process. Interestingly, only 1 of these donors had donated to his or her spouse, and the others had donated to a first-degree relative (parent or sibling). Therefore, although donors may be confident that they want to go through the process, spouses may not be supportive of this decision, and this may lead to longstanding marital conflict (ie, donors who reported adverse marital outcomes donated an average of 3 years prior to survey completion). The present study has a number of limitations. First, the cross-sectional nature limits our ability to draw conclusions about the ways in which interference due to donation changes over time. For example, some donors may have experienced consistently moderate levels of interference, whereas others may have experienced relatively low levels of interference, even immediately post-surgery. Results may also underestimate life interference, given that all donors were more than 3 months post-surgery. Further research is needed to examine the impact of donation at repeated time points, particularly in the initial 12 weeks postsurgery. Future studies are also needed to tease apart the association between psychiatric history and longer perceived recovery time. For example, it remains unclear why donors with a past or present mood, anxiety, or substance use disorder took longer to return to their predonation level of functioning and to what extent donor perceptions of recovery time map onto more objective measures of functioning at work and home. Questions regarding the financial impact of donation yielded high rates of missing data. Donors may not have provided this information for a number of reasons, including the length of time since donation, difficulty in distinguishing out-of-pocket costs from those covered by health insurance, and difficulty in putting a price on something that is perceived to be an act of altruism. Despite the confidential nature of the questionnaire, some donors may also have been uncomfortable divulging financial information. Asking donors to log their costs from the outset of the donation process may reduce missing data. This study focused predominantly on the negative impact of donation, and further research is needed on positive outcomes.31 For example, although donors with a past or present psychiatric di-
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agnosis reported a longer recovery time, this may not necessarily outweigh the benefits to both the donor and recipient. In conclusion, this study provides evidence from a large cohort of living liver donors and a standardized measure of illness intrusiveness that donors experience a relatively low level of life interference beyond 3 months following living organ donation. However, a substantial proportion of donors felt that donation was associated with a significant financial burden. Efforts to recognize and preemptively resolve financial constraints need to be made in each individual case but will also have to include a broader discussion of aspects such as reimbursement for donation-related loss of income.
ACKNOWLEDGMENT The authors express their gratitude to Maria Jacob for her assistance with participant recruitment.
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LIVER TRANSPLANTATION.DOI 10.1002/lt. Published on behalf of the American Association for the Study of Liver Diseases
