Portions of this work were presented at the American Transplant Conference, May 14–19, 2004.
Living Donor Adult Liver Transplantation: A Longitudinal Study of the Donor's Quality of Life
Version of Record online: 6 OCT 2005
American Journal of Transplantation
Volume 5, Issue 11, pages 2770–2777, November 2005
How to Cite
Verbesey, J. E., Simpson, M. A., Pomposelli, J. J., Richman, E., Bracken, A. M., Garrigan, K., Chang, H., Jenkins, R. L. and Pomfret, E. A. (2005), Living Donor Adult Liver Transplantation: A Longitudinal Study of the Donor's Quality of Life. American Journal of Transplantation, 5: 2770–2777. doi: 10.1111/j.1600-6143.2005.01092.x
- Issue online: 6 OCT 2005
- Version of Record online: 6 OCT 2005
- Received 2 March 2005, revised and accepted for publication 1 August 2005
- Adult-to-adult liver transplantation;
- living liver donor;
- quality of life
We report the results of a prospective, longitudinal quality of life survey on our adult right lobe (RL) liver donors. A total of 47 donors were enrolled; a standard SF-36 form and 43 questions developed by our team were completed before donation, at 1 week, and 1, 3, 6 and 12 months after donation. There were no donor deaths. Twenty-nine complications occurred in 16 patients. Major complication rate was 12.8%. Employment status and personal finances were identified as major stressors. All donors who wished to return to work did so by 1 year (mean 3.4 months). Individuals reported between $0 and $25 000 in losses (wages, travel, lodging, etc.). Relationships with recipients and other family members were not altered significantly. Anticipated pain (predonation) was greater than actual pain reported. Donors indicated satisfaction with the donation process regardless of recipient outcome. Physical complaints were significant at 1 week and 1 month, but returned to baseline. Donor mental health remained stable. In conclusion, RL donors found the experience to be a positive one throughout the first postdonation year. The study identified areas (finances, employment and expected recipient outcomes) to be stressed as future donors are evaluated.
Increasingly effective immunosuppression has made organ transplantation the treatment of choice for most patients with end-stage organ failure and has led to an exponential increase in the number of patients on the waiting list. Donation from deceased donors has remained static or has decreased in recent years resulting in patients waiting longer for transplantation and more patients dying before a suitable organ becomes available. Of approximately 19 000 patients listed for a liver transplant in 2001, less than 5000 were transplanted while nearly the same number died while waiting (1).
These trends have resulted in an increase in the use of living donors for most types of transplantation (1). Utilization of live liver donors was first described in 1988 when an adult donated a portion of her liver to a pediatric recipient (2). Subsequently, live donor adult liver transplantation (LDALT) utilizing right lobe (RL) grafts has gained widespread acceptance. In the United States, there was a rapid increase in the number of LDALTs performed, peaking at 518 in 2001 (1).
The highly publicized death of a living liver donor in 2002 contributed to a reduction in the number of LDALTs performed and a re-examination of the ethical issues involved in living liver donation. Morbidity and mortality rates are acceptable when measured by usual surgical parameters (3–5), but these measures provide no information regarding the impact of donation on the donor's physical and psychological well-being.
We report the results of a prospective longitudinal quality of life survey in which RL live liver donors self-report on the effect the donation process has had on various aspects of their lives over the course of a year. Donors completed surveys prior to donation and at five time points following surgery. The results have allowed us to provide clear and accurate information to potential RL donors from the perspective of actual donors and to refine our follow-up care to focus on areas identified as problematic.
Patients and Methods
The donor evaluation protocol followed at Lahey Clinic has been previously published (3,4). Potential donors must be between 18 and 55 years old and be genetically or “emotionally” related to the recipient. A transplant surgeon first describes the evaluation process, surgery, postoperative care and complications including death. A review of the program experience and the worldwide literature regarding the morbidity and mortality associated with RL donation is discussed during this initial interview. In our experience, nearly 15% of potential donors chose not to pursue further evaluation after this meeting (3,4).
An independent team then conducts a stepwise assessment of medical and psychosocial suitability (3). Potential coercion by medical team or family members and inappropriate motivation by guilt or unrealistic expectations are explored. A psychiatrist assesses stressors and supports as well as the capacity of the donor to give informed consent. The possibility of death or serious medical complications occurring in either the donor or recipient and the possibility of recipient relapse is frankly discussed.
A multidisciplinary screening committee meets weekly to review each potential donor/recipient pair. The committee's decision is first discussed with the donor, providing potential donors who may have changed their mind the opportunity to abort the donation process. Such decisions are kept confidential and ascribed to anatomic constraints. Donors acceptable to the screening committee then meet with a transplant surgeon approximately 1 week prior to the surgical date to give consent for donation.
Between March 2001 and October 2004, 75 potential LDALT donors were enrolled in the study. Twenty-six of the 75 did not proceed to donation and were excluded from analysis. Eighteen had medical conditions contraindicating donation, three had recipients unsuitable for living donor transplantation, and five recipients received deceased donor livers. There are two approved donors waiting for their surgical date. The remaining 47 patients underwent RL donation and participated in the study.
This study was approved by the Institutional Review Board of Lahey Clinic. Surveys were administered preoperatively, at 1 week, and 1, 3, 6 and 12 months following donation. The study consisted of a 43-question instrument written by team members (Figure 1) and a standard SF-36 questionnaire. The customized survey covered demographics, financial costs, relationships (recipient, family members), sexual function, postoperative symptoms and pain, psychological impact of donation, transplant outcome, pressure to donate, willingness to participate in the process again if possible, and the effect of donation on employment status. It was presented orally to each patient by a social worker.
The SF-36 questionnaire is a validated survey that measures general health-related quality of life. It measures eight domains of physical and mental function. Numerical scores assigned to each category are used to generate composite scores [physical components score (PCS) and mental components score (MCS)] (6,7). The general population of the United States has average PCS and MCS scores of 50 with a standard deviation of 10.
Data concerning donor and recipient postoperative courses and complications were compiled. Donor responses to survey questions were compared to complications and overall outcome. The transplant surgeon's evaluation of complications and outcomes for both donor and recipient was compared to survey questions dealing with these issues.
Descriptive statistics and mean values were compared using Student's t-test; p values of less than 0.05 were considered significant. Responses to the SF-36 were analyzed by fitting a linear regression using quality of life measures as the dependent variable and the number of days after surgery as the independent variable. The regression was controlled for the donor's age, gender, race, education, income, marital status and work status. The regression was corrected by serial correlation among observations for the same individual across the time frame of the survey.
All eligible donors completed surveys at preoperative, 1-week, 1- and 3-month time points. Thirty-six of 43 eligible donors completed the 6-month survey and 35 of 37 expected donors completed the 1-year survey. Thirty-five donors have completed surveys at all six time points, two donors declined to continue in the study, and 10 are less than 1 year postdonation (Table 1).
|Time||Number of donors at||Number completing||%|
Donors were mainly Caucasian (93.6%) and male (n = 29, 61.7%); all attended high school, 30 (63.8%) attended college, and 5 (10.6%) obtained graduate degrees. Mean donor age was 34.2 years (range = 18–54 years), 27 (57.4%) were married and 24 (51.1%) had at least one child. All donors were family members. The largest single donor group was children of recipients (n = 22, 46.8%) followed by siblings (n = 14, 29.8%). Most donors worked full time prior to surgery (n = 40,85.1%) and a majority had an annual family income greater than $45 000 (63.8%). Average length of hospital stay was 8.1 days (median = 8.4; range = 7–29 days). Complete donor demographics are shown in Table 2.
|Sex (male/female)||29/18 (61.7%/38.3%)|
|Age (year)||34.2 ± 9.6 (range 18–54)|
|Relationship to recipient|
|Length of stay (days)||8.1 ± 3.2 (range 7–29)|
The most frequent diagnosis among transplant recipients was hepatitis C (17/47, 36.2%). Hepatocellular carcinoma was present in 16 (34.0%) patients in addition to their primary diagnosis. The average model for end-stage liver disease (MELD) score was 17.3 ± 6.4 (median = 17.0; range = 7–31) and the median time on the transplant waiting list was 133 days (mean = 358; range = 2–2120 days). Recipients ranged in age between 20 and 60 years (mean = 50.0), had a male/female ratio of 31/16 and a median length of stay of 11.5 days (mean = 20.1; range = 8–121 days).
There were no deaths in the donor population. Twenty-nine complications were seen in 16 patients (Table 3) for a total complication rate of 34%. Major complication rate (defined as events requiring invasive intervention) was 12.8%. This included a postoperative bleed, one bile leak and one abdominal collection, a pleural effusion, peritonitis and a pulmonary embolism secondary to a deep venous thrombosis. Minor complications included wound infections (n = 7), ileus (n = 3), alopecia (n = 3), clinical depression (n = 2), transient radial neuropraxia (n = 2) and one each of the following: bile leak resolving with Jackson–Pratt drainage, self-limiting bleed from a preexisting duodenal ulcer and internal jugular DVT. Three incisional hernias diagnosed more than 1 year postoperatively were repaired electively.
|Major complications (n = 6, 12.8%)|
|Reoperation for bleeding||1|
|Bile leak requiring drainage||1|
|Pleural effusion (thoracentesis)||1|
|Abdominal collection (drainage)||1|
|Pulmonary embolus secondary to deep venous thrombosis||1|
|Minor complications (n = 20)|
|Radial neuropraxia (transient)||2|
|Internal jugular thrombus||1|
|Upper gastrointestinal bleed (self-limited)||1|
|Incisional hernia (elective repair)||3|
Complications occurred in 33 recipients. Biliary complications (n = 19), including disruptions, leaks and strictures, and vascular complications (n = 7) were most common. There were eight graft losses (17%) resulting in either retransplantation (n = 2) and/or death (n = 7). Complete recipient results will be reported separately.
Effect on employment: There were 36 donors working full time prior to surgery and who were 1-year postdonation at the time of this analysis. Of these, 33 wished to return to full time employment and 3 chose to work part time. Of the 33, 7 (21.2%) returned to work at 1 month, 19 (57.5%) returned to work by month 3, 6 (18.1%) returned by 6 months and 1 (3.0%) donor returned to work by 1 year. Mean time to return to work was 3.4 months.
Financial implications: Most donors identified lost wages and consequent negative effects on their family as their greatest concern regarding the donation process. Preoperatively, 27 donors (57.4%) chose lost wages as their biggest concern, and postoperative surveys continued to reflect this concern. This number included 21 who were working full time, 5 who were working part time and 1 who was not working at the time but expected to go to work after the surgery was completed. An additional 17 employed donors (16 full time and 1 part time) indicated minimal (n = 12) or no (n = 5) financial concerns preoperatively but 7 cited this postoperatively. Medication costs were concerning before, but not after, donation. Mean preoperative estimate of donation costs was $4018.00. Average reported out-of-pocket cost was $5305.00, but individual responses ranged from $0 to $25 000.
Effect on relationships: Preoperatively, most donors reported being “extremely close” (26/47, 55%) or “close” (14/47, 30%) to the recipient. A smaller group (7/47, 15%) described themselves as “somewhat close.” This group included one son, one sister, two brothers-in-law and three brothers. Three of these chose “close” at the 1-week survey, but “somewhat close” at all other time points; three donors chose “somewhat close” at all times; and one donor upgraded response to “close” at all surveys after the preoperative one. Approximately 34% of donors reported a change, either positive or negative, in their relationship with the recipient at some point. However, regardless of the nature of the change, 44 of 47 donors reported a return to their original relationship at the 1-year point.
The relationship with a spouse or significant other was reported as “improved” or “greatly improved” by 66.7% of the donors at least once during the year. Three donors reported a transient worsening of their relationship. Most (93%) reported no change in their sexual function or level of intimacy at 1 year and some reported this by 1 month. “Greatly worsened” or “worsened” sexual function was reported at 1 week and/or 1 month postoperatively by 49% of donors, but most reported return to baseline by 3 months. A small number (4.3%) reported sexual function remained “worsened” at 1 year.
Physical symptoms: Preoperatively, 15.8% of potential donors expressed significant concerns about postoperative physical symptoms with leg swelling, stomach tone and surgical scars most frequently mentioned. At 1 week, donors cited bloating (26%) and lack of stomach tone (11%). These two symptoms were the most frequently mentioned concerns of donors over the first half of the year. Weight gain and clothing fit were concerning for a small number of donors after 6 months. At 1 year, donors reported minimal concerns regarding physical symptoms.
Pain: The results of preoperative surveys showed that approximately one half of the donors (22/47) thought the procedure would be “extremely painful” or “very painful” and the remainder expected it to be “somewhat painful” (25/47). At 1 week, their discomfort was described as “extremely painful” by 6%, as “very painful” by 16%, as “somewhat painful” by 58% and as “slightly painful” by 20%. By 1 month, only 4% of the donors indicated discomfort as “extremely” or “very painful,” while approximately one-third indicated “somewhat painful” and over 50% described their discomfort as “not very painful.” At 1 year, all donors denied significant pain (Figure 2).
Transplant outcome: More than one half of the donors (27/47, 57.4%) believed that the transplant to be “very successful” at all time points. An additional seven felt that the transplant was “somewhat” successful at early surveys but very successful at all other time points. The transplant surgeon agreed that all of these transplants were very successful. In four cases, both the surgeon and the donor rated the transplant as unsuccessful. Both donor and surgeon characterized one additional case as “not very” successful.
In 7 of 47 cases, the donor's perception of the transplant's success changed from “very” successful at 1 week to “somewhat” or “not” successful at later surveys, while the surgeon continued to rate the transplant as successful. In the remaining case, the donor felt the transplant was “somewhat successful” at 1 week and 1 month but “very successful” at 3 and 6 months, while the transplant surgeon judged the outcome to be “not very successful” at all time points.
Pressure to donate: One donor reported external pressure from family members to donate. All other donors reported no external pressure at any time point. However, 11 donors (23.4%) reported that they felt internal or “self” pressure to donate at one or more times.
When asked if they would donate again if given the chance, 11 donors said “no” at least once during the study. Of this, 8 responded negatively only at the 1-week point. One donor answered negatively at the 1-week, and 1- and 6-month points, while another donor said no at the 3- and 6-month surveys, and the final donor answered negatively at all postoperative time points. On the last survey, 46 of the 47 (97.9%) donors said they would donate again. The donor who reported family pressure to donate was not the donor who indicated that she would not donate again.
Physical composite score: Donors had a mean score of 55.80 preoperatively indicating that this group may be slightly healthier than the general population. The PCS score dropped to 29.71 (p = 0.02) at 1 week, indicating poor physical functioning postsurgery. The adjusted physical scores improved with values of 37.48 (p = 0.04), 41.90 (NS), 48.31 (NS) and 61.35 (NS) at 1 month, 3 months, 6 months and 1 year, respectively. The PCS score at 1 year shows no significant difference from the pretransplant score.
Mental composite score: Donors had a mean score of 54.17 preoperatively, indicating that this group may have slightly better mental health than the general population. The MCS did not deteriorate as much as the physical component did, suggesting that the mental health of the donor remained stable. At the 1-week point, the donors scored an average of 54.12. The MCS remained relatively constant with values of 53.75, 54.43, 55.40 and 57.39 at 1 month, 3 months, 6 months and 1 year, respectively (all NS compared to baseline).
While living donor liver transplantation is clearly of great benefit to the recipient, it poses risks of morbidity and mortality for the otherwise healthy donor. The number of living donor liver transplants is increasing worldwide. It therefore becomes increasingly important to obtain reliable data, concerning the effect donation has on the quality of a liver donor's life following donation.
We report a prospective, longitudinal quality of life survey conducted on 47 consecutive living adult-to-adult RL liver donors at our center. Donors completed the same survey instruments preoperatively and at five postoperative time points, allowing changes in individual responses over time as well as group responses at specific time points to be analyzed. The overall compliance rate for survey completion was high (96.9%). This rate reflects our policy of following all liver donors for 1 year at the transplant center and administering the surveys, in person, at those scheduled visits. This policy differs from other quality of life reports (8,9), but we believe that this approach provides maximum information regarding the impact of donation at various time points.
The demographic information for our donors is similar to that reported for other groups (8,10,11). As a group, they were relatively well educated and all were family members of the recipient. There were no parents donating to children in this study. This is noteworthy because some reports suggest that the inherent guardian or protector nature of that relationship interferes with reasoned decision making (12,13) and that quality of life results from this group require separate analysis.
The SF-36 survey was used to assess the physical and psychological status of our donors at each time point. Preoperatively, our donors scored slightly above average compared to that of the general population. This is an expected finding and is consistent with other reports (10,11,14) as donor evaluation is designed to eliminate individuals with physical or psychological problems. The donor's postoperative physical scores were lower, but successive surveys showed consistent improvement with all donors back to baseline by 1 year. The donors' mental health scores contrasted sharply with their physical scores during the early postoperative period. There was no significant change from baseline scores at any time point. This was true for all categories of donors including those whose recipients had unfavorable outcomes. This differs from the experience of Kim-Schluger (8) who reports that donors whose recipients suffered major complications scored significantly lower on the mental health scales compared to other donors. The reasons for this difference are not clear-cut. Our program requires both a psychiatric and a social worker evaluation of all potential donors. The transplant social worker assesses donors daily after surgery and offers assistance when needed. It is possible that rigorous screening procedures together with ample postoperative support results in a donor population that is well prepared to cope with the stresses of donation.
Pain is repeatedly cited as a significant concern to donors (8,10,11,15). Preoperatively, approximately 50% of our donors anticipated that donation surgery would be “extremely” or “very” painful, while the remainder indicated that they thought the procedure would be “somewhat” painful (Figure 1). One week after donation, the number indicating “somewhat” painful rose to 57%, but donors choosing “very” or “extremely” painful dropped to under 25%. The reasons for this surprising finding are unclear. Perhaps potential donors with substantial fears of pain or death are eliminated early in the process. Our donor education process stresses the significant pain associated with donor hepatectomy. The potential donor evaluation begins with an interview with a transplant surgeon who gives explicit details regarding the donor hepatectomy, postoperative pain associated with the procedure and potential complications including death. This may result in excessive preoperative estimates of pain in donors who complete the evaluation process. Donors receive an epidural for pain control and are visited daily by the pain service while hospitalized. The combination of preoperative education and postoperative pain management may result in the donor's actual pain being less intense than anticipated.
Our donors were primarily concerned with the impact that donation would have on the financial status of themselves and their family. Anticipated (preoperative) and actual (postoperative) estimates of lost wages were consistent. Lost wages were the most problematic cost for all donors, but the impact varied greatly ranging from $0 to $25 000. Individuals who were self-employed or who worked on commission reported the greatest dollar losses. Individuals with sick time benefits or disability insurance reported minimal financial concerns. Donors who live a significant distance from the transplant center incurred additional expenses associated with travel and lodging. The results highlight the large variation in the types of expenses associated with the donation process and emphasize the need for comprehensive and individualized financial plans to be in place prior to the actual surgery.
Donors expressed concern over the amount of time away from work associated with donation. This concern appears to be self-imposed as most also reported positive experiences with employers regarding time off for donation and utilization of available benefits. Approximately 21% of our donors returned to employment 1 month following donation; this suggests white collar employment for this subgroup. Donors with physically demanding jobs would not be able to resume work in this time frame. However, there was a wide range of time to return to work with six donors returning at the 6-month point and one at the 1-year point. Donors who delayed return to work reported exhaustion and fear of becoming “too tired” while away from home as reasons. This is consistent with reports from other groups (8,10,11,13) and suggests that donor expectations concerning the time required for physical recovery were unrealistic.
Published studies suggest that donors frequently perceive themselves to be of secondary importance to the transplant recipient (10,13). Our donor cohort did not report this perception. We believe this is related to our efforts to separate the donation process from the transplantation process in so far as possible. In addition to the expected independent assessment of physical and psychological suitability, we also utilize separate rooms during hospitalization to preclude donor–recipient comparisons, a dedicated live donor nurse coordinator to act as a donor advocate and scheduled in-clinic postdonation follow-up visits to allow assessment of hepatic regeneration and detection of physical or psychological problems.
There are two major ethical issues surrounding consent to donate in living donor transplantation. The first is that the decision to donate must be “informed” and the second is that it must be free of coercion. The former is relatively easy to achieve via predonation evaluation and education. The latter is much more difficult to document and quantify. If death of the recipient is the likely outcome of not donating, this knowledge is probably in itself coercive (16). Only one donor admitted to overt family pressure, but a few alluded to conflicts within the family regarding the transplant process; it is possible that this resulted in covert pressure to donate that was not recognized, or alternatively, not acknowledged by the donor. It is also possible that family pressure to donate is underreported. Our transplant team emphasizes that donations must be entirely voluntary and donors who were pressured in some form may be unwilling to admit this.
Seven donors characterized their relationship with the recipient as “somewhat close” in the preoperative surveys and only one of these felt the experience resulted in a permanent change in the relationship. In the comments section of the survey, several said “it was the right thing to do,” two cited the difficulties they would have living with themselves if they allowed the recipient's children to grow up without a parent and one felt that his personal satisfaction would have been greater if his relationship with the recipient was closer but that families have obligations to care for one another. The donor who felt the relationship became closer following the transplant felt proud of his involvement and described great satisfaction with the new tenor of the relationship.
The possibility of a donor death or significant hepatic injury is the major concern of the LDALT team. It was therefore surprising that these worries did not figure significantly in the donor concerns. The question of dying is not directly addressed in the survey, but every member of the evaluation team, beginning with the initial interview with the program director, discusses it with the donor. The social worker specifically asks the donor to comment on any question or concern not addressed by the survey, but none listed fear of dying or surgical complications. Several things may factor into the discrepancy between our expectations and the donors actual concerns. Health care workers are acutely aware of how dramatically clinical situations can deteriorate. Donors may lack that personal knowledge. Of the donors who did ask about death, most phrase there question “Have you had any deaths in this program?” Other comments include: “I block it out because you've had no deaths and this needs to be done” and “You've done it a lot and I trust you will do it alright for me.”
A potential weakness in our method of evaluating donor quality of life is that a member of the transplant team conducts the surveys in person. This approach clearly results in a high rate of survey compliance. It may also deter some donors from answering sensitive questions truthfully as a clear association between respondent and answer is possible. Currently, we are considering providing the donor a short questionnaire and a stamped, self-addressed envelope. They will be asked complete the survey and return it anonymously.
Our donors found the overall donation experience to be a positive one. Several (11/47) did question their decision to donate at some point during follow-up. Most (n = 8) negative responses occurred only once, primarily during the first postoperative month while the donors were recuperating from surgery. One of the two donors who went back and forth was our youngest donor (aged 18 years). It is possible that lack of maturity contributed to her conflicting feelings about donation to her parent. Examination of the written comments that accompany each survey did not reveal any reason for the negative responses or any association with complications. The one donor who consistently indicated an unwillingness to donate again indicated that her reason for donating to her spouse was “to keep the family together.” The recipient has had a good outcome, and the donor was very positive about most other aspects of the donation process and expressed a desire to speak with and offer support to other donors.
At the end of the survey period, all donors except the one described above felt strongly that they would repeat the donation process and would encourage others to participate as liver donors. They felt that they had personally benefited from the experience and this feeling was not affected by complications in either the donor or recipient. The lack of correlation between transplant outcome and donor satisfaction has been reported by others (11).
There was agreement between the donor and the transplant surgeon regarding transplant outcome in most instances. However, a divergence of opinion was noted when the recipient's outcome was not clear-cut. Approximately 15% of the donors initially felt the transplant was very successful, but reported the outcome to be “not very” successful at later time points while the surgeon continued to rate the outcome as successful. This discrepancy probably reflects unrealistic expectations on the part of the donor and highlights an area of education that should be addressed with future donors. In particular, donors need to understand that hepatitis C will recur and that the recipient's physical rehabilitation will be prolonged and in some instances incomplete.
This study suggests that living liver donors find the overall experience to be a positive one. The study also allowed us to critically examine the various aspects of our donor evaluation process and to develop recommendations for future use. Some of the major suggestions derived from this study are (1) emphasize the donor as a patient separate from the recipient; (2) continue to stress that significant postoperative pain will occur but that it can be controlled; (3) insure adequacy of donor's financial situation prior to donation; (4) provide follow-up at transplant clinic for 1-year period when possible to allow detection of late occurring complications related to donation that may go unrecognized in other settings; (5) provide opportunity for potential donors to speak with actual donors about the process, including the amount of time required to return to “normalcy” and the effects of the process on personal relationships; and (6) provide donors with a realistic assessment of what transplant outcome is likely to be for their recipient in terms of physical rehabilitation and disease recurrence.
This work was supported by a grant from the Robert E. Wise Foundation.
- 1UNOS. Annual Report, 2001.
- 16Janis IL, Mann L, eds. Decision making; a psychological analysis of conflict, choice and commitment. New York : The Free Press, 1979 (Chapter 6).