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Keywords:

  • Liver transplantation;
  • living-related liver donors

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Use of live donors as a source of transplantable livers has expanded to include adult recipients. Follow-up reports concerning living donor experiences are short-term and primarily focus on medical outcomes. We present our quality of life findings from a purposive sampling of a cohort of adult-to-pediatric live liver donors, 3–10 years after donation. In-depth interviews conducted among 15 live donors revealed the spectrum of complexity and impact that donation had on the donors. Virtually all donors (14/15) reported that they never really made a decision to donate; rather, agreeing to donate was an automatic leap. Overall, 10 out of the 15 donors related a sense that they were considered nonpatients by the medical team and family members in two primary areas: post operative treatment of pain (6/15) and long-term follow-up care (9/15) with five donors reporting concerns in both areas. Overall, family relationships were believed to have been strengthened by the donation process. Most donors experienced some degree of financial strain with three donors maintaining unrewarding employment to continue healthcare insurance. The majority of donors reported that return to normalcy took a significant amount of time even though no serious medical consequences were experienced. These observations serve to highlight some of the long-term quality of life issues that persist beyond the medical consequences of live donation.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

As transplant centers seek to alleviate the increasing inequity between the demand for transplantable organs and the supply of deceased donor organs, the use of living organ donors in the U.S. and internationally has expanded in recent years. Kidneys, portions of liver, lung, small intestine and pancreas are being used from living donors for organ transplantation. In liver transplantation, use of living donors has expanded to include adult recipients at a rapid rate (1–4). Given that the use of living organ donors puts otherwise healthy individuals at risk for the health benefit of another person, there is an ethical responsibility to define and understand the full range of risks (medical, psychological, social and economic) being assumed by living donors (5,6). Understanding these risks will improve the pre-donation selection and preparation and the post-donation care and support of living donors.

Follow-up reports on living liver donors have generally focused on medical complications (1,7–12), rather than on quality of life issues. To date, the small literature on postdonation quality of life issues for living liver donors has two primary limitations. First, existing studies have relied primarily on standardized questionnaires of a general nature (e.g. the Medical Outcomes Study Short-Form Health Survey [SF-36]) (13–19). Standardized surveys lack both the specificity and the sensitivity necessary for capturing some of the particular quality of life issues that may emerge for living liver donors (20,21). In addition, the often-employed technique of comparing the scores of donors vs. the general population on such standardized instruments may be misleading, as donors have already been selected for good health and psychological stability, a prerequisite for donation. Second, previous studies have contacted liver donors within a relatively short time after the donation (often less than a year) (13–19). This short duration between donation and follow up is a serious handicap when trying to assess the long-term consequences of living donation.

This study offers two key contributions to the existing literature. First, using the qualitative method of in-depth individual interviews allows for the exploration of the complex and often sensitive issues involved in quality of life assessment. Issues such as marital tension, financial difficulties, problems with other children in the family and the donor's own sense of physical and emotional well-being often emerge in full only as rapport is built over the course of an in-depth interview. In addition, in-depth interviewing allows subjects to define and describe quality of life issues in their own terms. A second critical contribution of this study is the opportunity to investigate a long-term cohort of living liver donors.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Subjects

Using the University of Chicago Hospital transplant program database, a cohort of 130 adult-to-pediatric living liver donors dating from November 1989, was identified. Donors were eligible for study inclusion if they had served as an adult-to-pediatric living liver donor at least 1 year before November 2001. Donors for whom current contact information was unavailable and donors currently living outside of the United States were excluded from the study. Although statistical representation and analysis was not a goal of this study methodology and sample size, purposive sampling was used to ensure that study donors represented a range of variation on three critical variables: donor gender, length of time since donation and outcome of donation. Identified subjects were contacted by phone and oral consent for participation was obtained using an institutional review board (IRB)-approved script. This study was approved by the University of Chicago IRB.

Study design

Telephone interviews were conducted either at the time of initial contact, or at a later date, according to the subject's preference. All interviews were audiotaped with subject permission. Interviews ranged from 45 to 120 min in duration. One interviewer (MCM) conducted all interviews using an interview topic guide. All interviews covered the same range of topics in sequence: the decision-making process leading up to the donation, the donation experience itself and a wide variety of aspects of postdonation life, including family and other personal relationships, professional life, financial concerns, physical experiences and emotional attitudes. The semi-structured nature of the interviews imposed sufficient uniformity across the interviews to allow for comparison. The open-ended nature of the questions provided flexibility to explore particular topics in greater depth according to the different experiences of the subjects and permitted the study subjects to raise topics for discussion not originally anticipated by the researchers.

Data analysis

Interview tapes were analyzed to produce detailed individual interview summaries, including lengthy verbatim quotations. Individual interview summaries were subjected to content analysis to identify recurrent key themes that emerged across the interviews which were used to identify important quality of life issues for living liver donors. Key issues that emerged from the interviews were organized into five topic areas: (1) deciding and preparing to donate, (2) perception of donor as a ‘non-patient’, (3) family relationships, (4) financial and insurance issues, and (5) return to ‘normalcy.’ Results in each topic area are summarized and illustrated using representative quotes from the donors.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Study subject characteristics

Data from 116 of the 130 patients were available for review. Of the patients not interviewed: 34 did not have a contact number; 25 had an incorrect contact number (out of service, wrong number or disconnected); seven were out of the country; 22 did not answer; four were lost to follow up after initial contact; two are in legal proceedings and seven were not contacted because the study cohort was established.

In-depth interviews were conducted with 15 living liver donors (11 women and four men). All subjects were parents who had donated a portion of their liver to their child. Time from donation to interview ranged from 3 to 10 years. Recipient outcomes varied: six recipients continued to do well with the transplant, six recipients survived but continued to have ongoing significant health problems after the transplant, and three recipients died at some point after the transplant (Table 1).

Table 1.  Demographics and Outcome of Donor and Recipient Pairs in Adult-to-Pediatric Live Donor Liver Transplant
Dnr Sex/AgeLiver donatedRcpnt SexRcpnt Age at TxRelation to RcpntType of ESLD in RcpntYr of donationOutcome of LDLT
  1. Dnr – donor; Rcpnt – recipient; LLS – left lateral segment; LL – left lobe; LDLT – live donor liver transplant; PVS – persistent vegetative state; PVT – portal vein thrombosis; ReTx – retransplants; GVHD – graft vs. host disease; P-HTN – pulmonary hypertension; PH –portal hypertension.

 1. F/30LLSF4 monthsMotherBiliary atresia1997Alive-Stable
 2. F/29LLM10 monthsMotherBiliary atresia1993Alive-Re-listed
 3. F/23LLSF9 monthsMotherBiliary atresia1993Alive-GVHD
 4. F/31LLF10 yearsMotherBiliary atresia1994Alive-Stable
 5. F/29LLSF5 monthsMotherCongenital defect1991Alive-P-HTN
 6. F/27LLSM8 monthsMotherGenetic liver disease1991Alive-Immune deficiency disease
 7. M/29LLSM8 monthsFatherBiliary atresia1999Alive-ReTx-stable
 8. F/32LLSF6 yearsMotherBiliary atresia1995Alive-Stable
 9. F/28LLM3 yearsMotherSclerosing cholangitis1993Died-PVS after ReTx
10. M/46LLSM9 monthsFatherCongenital defect1994Alive-Stable
11. F/27LLSF8 monthsMotherBiliary atresia1996Alive-Bile duct, PVT
12. M/30LLSF5 monthsFatherBiliary atresia1991Died-vascular thrombosis
13. F/33LLSM9 monthsMotherBiliary atresia1996Alive-Stable
14. M/23LLSM8 monthsFatherBiliary atresia1992Died-PVS after shunt procedure for PH
15. F/32LLSM3 yearsMotherBiliary atresia1996Alive-Chronic bile duct stricture

Deciding and preparing to donate

Virtually all of the donors, 14 out of the 15 donors interviewed, reported that they never really made a decision to be a donor. Rather, agreeing to donate was an ‘automatic leap’ they made upon first hearing of the possibility: ‘It was nothing we really talked about. We never said, well here are the pros and cons to this.’ Donors described feeling so ‘shell-shocked’ or ‘so focused on helping my son’ that they simply were not able to rationally think through a decision about donation: ‘I think I was on automatic pilot … It happened, it happened fast and we did it. I felt like I was kind of in a fog.’ Only one donor reported weighing the decision to donate carefully and with difficulty. Notably, this donor experienced enormous guilt about the fact that it was not an automatic decision on her part. She finally decided to donate largely because of the constant pressure she felt from the comments of family and friends: ‘I think a lot of my decision … was a peer pressure kind of thing. You know, it wasn't that I didn't want to do it, but there was a lot of fear, and it was more of the other people saying, well, if it was my kid I would do it, you know.

Reflective of the fact that this was not a reasoned decision-making process for most parents, the vast majority of subjects made no significant preparations for the worst case scenario before the donation: ‘I didn't really plan for something bad. Isn't that odd?… I think my thoughts were so focused on this baby and his only hope of getting better.’ Only one subject reported that she and her husband made sure that their wills and life insurance paperwork were in order and established guardianships for their children. All other donors described being so focused on the sick child that there was really no room for thinking through anything other than managing the basic logistics of getting that child to the transplant: ‘At that point in time we were just ready to do it and get it behind us and we weren't thinking about much else other than let's get this over with.

Importantly, the automatic nature of the ‘decision’ to donate also emerged in subjects' reports that they do not regret their decision to donate – regardless of the eventual outcome of the donation. Whether the transplant was successful or not, donors described that it was simply something they ‘had to do’ and thus not something they could regret afterward.

Perception of donor as a ‘non-patient’

Another issue that emerged throughout the interviews was the sense that donors, as healthy people, may be considered ‘non-patients’– by the medical team, families and donors themselves. This is in contrast to the transplant recipients, who are perceived as the ‘real’ patients, and command the majority of attention and concern: ‘It seemed like I was secondary, even though they needed my liver for the baby. But the baby was the most important thing.

Ten donors relayed a sense of being regarded as ‘non-patients’ by the medical team, which emerged in two primary areas: post-operative treatment of pain and long-term follow-up care. Post-operatively, six donors reported significant pain, often more than they had anticipated. Several donors commented that they believed their pain may not have been managed sufficiently. Nine donors reported having little medical follow up, most having had just one follow-up visit, and some seemed relatively comfortable with this: ‘I had no follow-up at all … I guess the way they explained it initially was enough to satisfy me …I did ask afterwards, am I going to need to come back, and they explained no, your liver will regenerate, it shouldn't cause any problem. And so I felt satisfied, and was probably more concerned about my son.’ Five donors expressed shared concerns in both areas.

Other donors, however, worried about the lack of follow-up care and some described feeling as if they had been discarded by the medical team once the organ was obtained: ‘Sometimes I feel like I've been used and just kind of thrown away, because nobody ever really asks about me.’ One donor reported feeling obliged to orchestrate her own follow-up testing, but was concerned that other donors would not have the ability or access to do so: ‘I made sure that I had Chem 17 blood tests to check my liver function, I did that myself on a regular basis for probably two years after the surgery… I should not have had to become the doctor too.

Importantly, even those donors who reported being uncomfortable with the lack of follow-up care stated quite clearly that they were too focused on their child's health to want to divert any of the medical team's attention toward themselves: ‘I would have liked to have known, did my liver regenerate? Or how long did it take, or whatever? Just to say hey, we checked you out …But I mean I felt fine and there was no reason for me to think that I wasn't … I was probably pretty much more concerned about my child than myself. So I just figured whatever, I'm fine. They're checking her numbers, but they don't need to check mine.

Despite the lack of follow-up with donors, only one of the study subjects reported significant complications from the donation. In this case, the donor experienced post-operative gastric dysmotility which was treated during the hospitalization. However, over the subsequent years, dysmotility problems continued and although he was not sure whether or not they were attributable to the donation, he has resisted seeing a physician. All other donors reported no complications and no noticeable physical changes since the donation.

Family relationships

Five donors reported substantial marital strain, which in two cases ultimately ended in divorce after the donation and transplant. In both cases, the donors believed that the ultimate collapse of the marriage was owed to problems such as infidelity, alcoholism and financial problems and not to the transplant. In three cases, donors reported marital difficulty specifically related to the post-transplant period as they tried to return to some sort of normal life and relationship after being so focused on the medical crisis: ‘With my husband and I, it was difficult … because we had been so absorbed with being caretakers and a lot of times taking opposite shifts it changes the dynamics of your relationship a lot … After awhile we realized that we don't have to live in crisis mode. But that's something that's hard to pull out of sometimes.’ Ultimately, however, 10 donors reported that the experience strengthened their relationships with their spouses (and often with extended family as well), by refocusing their priorities on family and by showing them what they were capable of achieving together.

Some donors reported effects on their relationships with other family members as a result of the donation and transplant. A few donors worried about the long-term effect on other children in the family: ‘I often look back and think that my younger daughter didn't get the attention “A” got … she was healthy and so we're not going to make a big deal about her … and I think that's had an impact on her … she's different, hard to get along with.

A few donors also noted that they had to learn to communicate differently with extended family members after the transplant because it was hard for people to understand the reality of the ongoing challenges of living with a transplant for their child: ‘A lot of people … assumed that you're done with the transplant and now there's nothing to worry about … you sort of have to control what information you pass along to them, because you don't want the excessive worrying and continuous questions.

With the majority of donors being female and of child-bearing age we investigated what impact live liver donation had on subsequent pregnancy and family planning. Eight female donors had full-term pregnancies after donation without any complications related to the donation process. (Two donors having two pregnancies each and six donors having one pregnancy each.) The seven remaining donor families chose not to have additional children after donation. The reasons cited for this decision include: a conscious decision because of the transplant recipient's illness (three families); reasons unrelated to illness or donation (two families); divorced after the transplant (two families).

Financial and insurance issues

Although most donors experienced some financial strain, only four donors reported difficulty in initially getting their insurance companies to cover the donation and transplant (particularly those from the early years when living liver donation was regarded as an experimental procedure). Eventually, however, all donors able to get most and often all of their medical expenses covered by insurance. One family declared bankruptcy about a year after the transplant because of medical bills that accrued owing to instability of her husband's job (and thus of insurance): ‘We did have the medical bills really pile up on us because of my husband switching jobs several times, so we did file for bankruptcy on the medical bills … We were on public aid for a while, after the transplant, but then after a while they cut us off because he was doing so well. And that's when the bills started to pile up and we had nowhere to turn but bankruptcy.

Other families were affected by the lost income when one spouse left work to take care of the sick child full-time. Within three families, the mother was chosen to be the donor because the father needed to maintain employment for insurance coverage. In addition, many donors reported that there was a significant financial burden incurred by the nonmedical expenses not covered by insurance such as travel costs, time lost from work, long-distance telephone bills, and other incidental expenses.

Of greater concern, seven donors questioned whether their child would still be covered and to what extent if they ever changed insurance companies: ‘There's no way we could switch insurance.’ Consequently, they reported that they plan to do whatever it takes to maintain the same insurance and avoid any risk that might be involved in switching – this may include feeling forced to stay in the same job: ‘It was a little bit concerning to think that I probably should not change or think about changing employers because of the insurance … And we didn't, we never did.’ Only four families actually changed insurance companies (usually as a result of changing jobs) and all reported no problems with the new coverage.

Return to ‘normalcy’

Most donors reported that it took them a long time to feel as if they were out of ‘crisis mode’ and back to normal life: ‘It took years to really feel normal, like we were really over the hurdle. For a long time I thought about it every single day, then eventually I thought about it once a week, and now it's maybe once a month or so.’ Donors emphasized that the first post-transplant year can be particularly tumultuous: ‘Probably your first year post-transplant is your big rollercoaster ride.’ In addition, several donors noted the lack of information available to them on the long-term effects of donation, and identified this as a need for families just embarking on the process: ‘There wasn't a whole lot of information on long-term, like how this was going to affect us long-term … Every once in a while I'll say, I wonder why no one ever calls us to ask us about this that and the other.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

This is the first, long-term, qualitative evaluation of living donors who have provided a liver graft for a pediatric recipient. While many reports have focused on the health status of donors, few have assessed the quality of life of donors and how the donation has affected themselves and their relationships. Our results were derived from phone interviews from a small cohort of patients. As such, the possibility of sampling bias must be acknowledged when applying our observations to other patient groups or live donors providing a liver graft for an adult recipient. Although all of the patients contacted agreed to participate in the study, their participation may represent a particular perspective associated with the procedure and experience that is not shared within the rest of the patient population. Additionally, using the qualitative method, this study has provided a more in-depth investigation than is possible with standardized questionnaires. This interpersonal interaction resulted in a richer understanding of the impact of live organ donation.

Implicit and explicit in any operation is the ascertainment of informed consent. In an effort to safeguard against coercion, the donor-informed consent process at our center was a multistep process, included a donor advocate and required a mandatory ‘cooling off’ period in the donor evaluation process. Yet, despite these safeguards, we found that the majority of donors admitted that they did not believe that their decision to donate was –or could be– objectively made. Donors stressed that their perception of the urgency of the situation and the overwhelming desire to save the life of the child for whom the donation was offered made the agreement to donate an ‘automatic leap’ rather than a carefully weighed decision. Interestingly, despite most recipients having chronic end-stage liver disease, the majority of families viewed their child's need for transplant as an acute crisis. This observation is important to acknowledge when counseling potential donors, as many donors may view their specific situation in isolation and for a particular donor-recipient pair, theirs is the most important crisis. Additionally, the issue of informed consent becomes even more important when the risks associated with the donation procedure increase, such as in right or extended right lobe liver donation.

Similar to what has been found in other studies of living donors, all of the donors in this study reported that they did not regret their decision to donate. In situations where the transplant was successful, donors were happy to have participated in saving the life of the child; in those situations where the transplant was unsuccessful and the recipient died or required re-transplant, many donors were comforted in knowing that they did all that could possible be done to save the child.

An important and distressing finding from our investigation revealed that many donors believed that the health care team in some ways seemed to view them as non-patients. This perception appears to be supported by two important observations. First, many donors commented on the inadequate treatment of post-operative pain. This finding is distressing in light of the very effective therapies available and serves to highlight a significant deficiency in postoperative management of the donor. With the advent of patient controlled analgesia (PCA) and assignment of a donor-advocate nurse we have improved pain management and the overall general care of these donors. Second, the lack of follow-up care as reported by more than half of the donors was equally distressing. While this study is a retrospective review and based on the donors' account, it does appear that long-term donor follow up was not an identified responsibility of the transplant team. This lack of substantive follow up by the surgical team may have contributed to the donors' sense of devaluation. While there is little long-term donor morbidity associated with the adult-to-pediatric live donor liver transplant operation we believe that long-term follow up of both the physical and psychologic health of donors should be the responsibility of the donor surgical team and the transplant center who has elected to undertake this procedure. Furthermore, we believe that the creation of a donor registry providing short- and long-term donor and recipient outcome information is long overdue.

Our experience in conducting this study suggests that donors are amenable to follow-up contact and may even appreciate it. It is worth noting that none of the donors successfully contacted by phone refused participation in the study. However, four donors were contacted initially and then lost to follow up (did not return phone calls or could not be reached during subsequent attempts), which may represent an implicit refusal to participate.

Reasons for the perception of donors as ‘non-patients’ are important to identify and address. In our program, the same surgical team cares for both the recipient and the donor. Consequently, both the surgical team and the family members might appear to be more focused on the serious condition of the pediatric recipient and less on the recovery of the healthy donor. Consequently, donors may not be viewed by the health care team as true patients who are in the hospital for treatment of a ‘real’ illness and therefore might be expected to recover faster, have less dependence on the health care team and subsequently receive less attention. This perspective by the health care team may have contributed to the inadequate treatment of postoperative pain experienced by donor patients. Extension of the live donor liver operation to provide a graft for an adult recipient carries with it a more significant operation and more significant donor risks. Therefore, the quality of care provided to all donors should be at least the same if not greater than that given to patients undergoing similar operations for reasons – therapeutic interventions – other than donation. Recently, we have assigned a nurse coordinator from the adult hepatobiliary/transplant service to interact with and advocate for the donor during the postoperative period. This practice provides every donor patient with a health care team member who is separate from the team caring for the pediatric recipient. Where possible, separate health care teams for the donor and recipient should be provided. In those situations where the surgical team treats both the donor and recipient all must be aware of potential conflicts of interest in the entire process of live donation for both donors and recipients.

Currently, the hospital costs associated with most live donor operations are covered by the recipients' health insurance. Unfortunately, long-term coverage of the donor for complications associated with the donation and many other expenses incurred in the process of donation are not universally covered. Costs associated with travel, missed wages, food expenditure, lodging, and child care are just a few of the substantial out-of-pocket expenditures that many families face. These unanticipated costs can be substantial for a family already limited by a seriously ill child. Many donors and donor families also expressed concern associated with the potential loss of health care coverage if they changed their employment. Although successful transplantation treats the end-stage liver disease, chronic treatment is required and the need for continued health insurance coverage was cited as a major reason for donors or donor spouses feeling constrained to stay in the same job. These financial pressures serve only to accentuate the anxiety associated with caring for a seriously ill child.

In addition to providing medical counseling, financial evaluation and counseling are essential in the work-up of the live donor. We recommend that donors have sufficient life insurance and disability insurance before undergoing organ donation. A knowledgeable financial representative should be provided to identify areas of financial vulnerability and assist in financial planning for the period of recovery after donation. These components will help protect the donor from unanticipated expenditures and help define the financial impact of their donation. Additionally, we encourage all donors to identify a surrogate decision-maker and complete an advance directive before donation.

As expected in most instances of serious illness, marital strife is frequently encountered. In the situation of transplantation and in particular live donor transplantation, these stresses on the marital relationship may be exaggerated. Interestingly, in our cohort the incidence of marital dissolution was lower than that witnessed in the general population, and of those couples who were still together they felt that the illness and donation made their commitment to each other and the family stronger. Among those individuals who underwent dissolution of their marriage, causes for the dissolution independent of transplantation were readily identifiable.

As with many life-threatening illnesses that involve children, close friends and family members are also involved in the family dynamics. The support of these individuals is welcomed and well intended, however, they sometimes fail to realize that a successful transplant which addresses the acute crisis does not mean that the recipient is ‘cured’ and free of the need for continued medical intervention and follow up. This change from acute need to chronic support can be misunderstood and may add a new component to the external stress experienced by the immediate family and donor.

While the majority of follow-up investigations on donor health focus on the return to work, normal activities of daily life and absence of morbidity, none has addressed the time required for the donor and family to achieve normalcy. This concept is difficult to define in a quantitative investigation. Through the interpersonal interview format of our study, we were able to explore the donor's perception of return to normalcy and time required to achieve it. Not surprisingly, the continued demands of caring for a sick child served to postpone addressing the needs of the individual donor. Donors postponed addressing personal needs while the child's illness continued. Therefore, many of the common emotional and physical stages associated with ‘healing’ after the donation were delayed. Interestingly, this denial of self might be analogous to and reinforced by the perceptions of other health care team members and family members, that donor needs were secondary to those of the recipient, i.e. not being treated as a patient. We believe that this observation is important to consider when investigating the health status of donors because they may underestimate the physical and psychological impact of donation until they begin to acknowledge their own needs. This finding regarding the difficulty and delay in returning to ‘normal life’ supports the study design in two ways. First, study subjects confirmed that the first year after transplant is too soon to assess long-term quality of life effects, and second, donors lacked information on the long-term effects of the donation process.

One aim of our study was to investigate the potential contribution of a qualitative interview in understanding the live donation experience. Our observations serve to highlight the added value of qualitative methods when examining the impact of donation on live donors. Although our study was based on a single-center with a small sample size, thus limiting the general application of the results, we used purposive selection to provide a representative cross-section of subjects. However, caution should be used in applying these observations to the general population of live donors. Specifically, application to situations of lesser and greater risk (kidney and adult-to-adult liver live donation, respectively) may not be appropriate. However, results from this study do serve to highlight the fact that many donors perceive that they are undervalued after the donation process and that despite the many safe guards in place to insure informed consent, many donors did not feel that they had a free choice in donating once they were identified as an acceptable donor. Furthermore, the observation that many donors believe that they are undervalued after the donation process should alert health care team members to modify their care of these patients after the donation. Finally, it is important for both donor and treating physicians to acknowledge that although the individual donor may physiologically heal and appear ‘normal’ the continued stress associated with the financial and health care demands of the child recipient may delay their psychological recovery from the donation process.

With extension of live donor liver transplantation to include adult donors for adult recipients and the increased morbidity and mortality associated with that operation, we believe that a qualitative understanding of the process is critically important in understanding the long-term consequences of donation. In the adult-to-pediatric live donor liver transplant operation, donor mortality is less than 0.1% and donor morbidity ranges from 10 to 15%. However, in the adult-to-adult live donor liver transplant operation, donor mortality has been estimated between 0.2 and 0.3% (22) [at least 10-fold greater than the mortality associated with living kidney donation (23)] and the reported morbidity is as high as 67% (7) Consequently, the risks to the donor are substantially greater when donating to an adult recipient, making the need for informed consent more critical. Qualitative research with live donors participating in adult-to-adult live donor liver transplant is needed to ascertain whether similar problems with predonation decision-making and postdonation experiences emerge in this higher-risk live donor population.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References
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