- Email: [email protected]
The living donor experience: Donor health assessment and outcomes after living donor liver transplantation
RAPID COMMUNICATION
The Living Donor Experience: Donor Health Assessment and Outcomes After Living Donor Liver Transplantation Kimberly L. Beavers,* Robert S. Sandler,* Jeffrey H. Fair,† Mark W. Johnson,† and Roshan Shrestha* Despite the increasing use of living donor liver transplantation, little is known about donor needs, concerns, and experiences. The goal of this study is to assess morbidity associated with living donation from a donor perspective, functional status after donation, and overall satisfaction with the donation process. We surveyed all living donors (LDs) from our center. Demographics, perioperative experience, and satisfaction with donation were assessed. The Medical Outcomes Study 12-Item Short-Form Survey (SF-12), a well-validated tool, measured overall health-related quality of life. Of 27 subjects eligible for the study, 27 subjects (100%) participated. Forty percent reported an event they deemed an immediate complication, of which 60% were recorded in the medical record. Complications requiring readmission were reported by 22%. Mean recovery time was 12 weeks (range, 1 to 52 weeks). No significant change was reported in physical activity, social activity, or emotional stability, and 92% of donors resumed their predonation occupation. Regardless of recipient outcome, 100% of donors would donate again and recommend donation to someone in contemplation. All surveyed LDs at our institution are satisfied with their donation decision. Morbidity in the first year after donation may be greater than previously appreciated. Despite complications, postoperative functional status of donors is equal to or better than population norms. (Liver Transpl 2001;7:943-947.)
S
ince the introduction of living donor liver transplantation (LDLT) in 1989, nearly 2,000 LDLTs have been performed worldwide.1 Previous data regarding living donors (LDs) reported morbidity rates of 0% to 67%.2-14 Because several of these reports were based primarily on early pediatric and adult left-lobe hepatectomy without long-term follow-up, the full extent of risk to LDs is not known. The medical community has raised concerns regarding the safety and ethics of LDLT as the application of living donation in this country increases.5,15-17 A workshop to address these issues, The National Institutes of Health Workshop on Living Donor Liver Transplantation, was held in Bethesda, MD, in December 2000. It is important that potential donors receive accurate and unbiased information on the risks of donor surgery.18 However, ensuring that prospective LDs have sufficient understanding of potential complications
before giving valid informed consent may be problematic because complications important to donors and long-term risks associated with donation are not known. Although several reports addressed surgical complications, no published study to date addressed issues specific to functional outcomes or complications from the donor perspective in both adult and pediatric LDLT. The goal of this study is to assess morbidity associated with LDLT from the donor perspective, functional status after donation surgery, and overall donor satisfaction with the donation process.
Materials and Methods We surveyed all LDs at our transplant center from September 1996 to October 2000. We excluded three donors: one donor whose surgery was aborted when the recipient decompensated, one donor whose surgery was aborted when noncaseating granulomas were identified at the donor’s porta hepatis, and one donor who died of sepsis after donation surgery. All subjects were assigned a study identification number at the time of enrollment, and all study materials used only this number as an identifier. The Institutional Review Board of the University of North Carolina (Chapel Hill, NC) approved this protocol. Each subject completed a mailed questionnaire assessing demographic information, informed consent, preoperative experience, surgical experience, postoperative experience, and overall satisfaction of liver donation (survey available from authors on request). The 50-item survey was initially constructed by the transplant team at our center after review of
From the Departments of *Medicine and †Surgery, University of North Carolina School of Medicine, Chapel Hill, NC. Supported in part by grant no. T32 07634 from the National Institutes of Health. Address reprint requests to Roshan Shrestha, MD, Associate Professor of Medicine, Medical Director of Liver Transplantation, CB #7080, 709 Burnett-Womack Bldg, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7080. Telephone: 919-966-2516; FAX: 919-966-1700; E-mail: [email protected] Copyright © 2001 by the American Association for the Study of Liver Diseases 1527-6465/01/0711-0003$35.00/0 doi:10.1053/jlts.2001.28443
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Table 1. Patient Characteristics
Characteristic Women (%) Mean age at donation (yr) Mean follow-up at time of survey completion (mo) Education beyond high school (%) Relationship to recipient Mother Father Son Daughter Sibling Extended family and friends First learned of LDLT Family Television Newspaper Gastroenterologist Transplant team Primary care provider Mean hospital stay (d) Mean complete recovery time (wk) Reported immediate complication (%) Readmitted to hospital (%) Reported recipient improvement (%) Would donate again (%) Recommend LDLT to someone considering donation (%)
the living donor kidney transplantation and adult-to-pediatric LDLT literature. The initial instrument was pretested by administration to a trial group of three donors, then revised with psychometric expertise. The majority of question responses used a five-point Likert scale. Questions regarding complications and time to recovery were open-ended. Additionally, each donor was administered the Medical Outcomes Study 12-Item Short-Form Survey (SF-12), a well-validated 12-question measure of health-related quality of life that yields summary outcome scores that can be compared with population norms. If the donor did not respond to the mailed survey request within 8 weeks, he or she received a phone call to explain the study, answer questions, and seek participation in a telephone interview. Additionally, medical records of each subject were reviewed to assess documented complications. Data analysis was performed using Stata version 6 (Stata Corp, College Station, TX). Descriptive statistics were calculated using simple contingency table methods. Chi-squared test and t-test were used for categorical data and continuous data, respectively.
Results All subjects eligible for the study participated. Twentyone participants completed a written survey, and six
All Donors (n ⫽ 27)
Adult-to-Adult Right-Lobe Donors (n ⫽ 14)
67 35 (18-50) 20 (1.5-48) 48
57 39 (27-50) 13 (2-30) 57
7 4 2 4 4 6 9 3 5 4 4 2 8 (3-14) 12 (1-52) 40 22 89 100 100
0 0 2 4 4 4 5 3 4 0 1 1 9 (6-14) 18 (4-52) 64 29 86 100 100
patients completed telephone interviews. Characteristics of subjects are listed in Table 1. The donor population included 67% women, with a mean age of 35 years (range, 18 to 50 years). Fifty-two percent of respondents donated right lobes to adult recipients. Mean follow-up at the time of survey completion was 20 months (range, 1.5 to 48 months). Morbidity The mean hospital stay was 8 days (range, 3 to 14 days). Ninety-two percent of LDs reported that their hospital stay was shorter than expected or as expected. Eight donors were administered an autologous blood transfusion; one donor (3.7%) required a nonautologous blood transfusion in addition to their autologous blood. In response to an open-ended question, 40% of donors reported at least one event that they deemed an immediate complication (Table 2). Delay in return to normal bowel function was the most frequently reported complication (n ⫽ 5); others included pain, brachial plexus injury, blood clot, incisional infection, pleural effusion, sore throat, foot paresthesias, persistent short-term memory loss, chronic fatigue, “fluid between lung and liver,” and bile leak (n ⫽ 1 each).
Donor Outcomes After Living Donor Liver Transplantation
Table 2. Summary of Immediate Complications Not Related to Hospital Readmission as Reported by Patients LD for adults Constipation or a delay in return to normal bowel function (5) Severe abdominal pain (1) Persistent abdominal pain (1) Incision pain/loss of sensation below incision line (1) Blood clot (1) Persistent short-term memory loss (1) Chronic fatigue syndrome (1) Pleural effusion (1) Staphylococcus infection of the throat (1) Brachial plexus injury (1) Foot paresthesias (1) Fluid between lung and liver (1) Bile leak (1) Fever and elevated white blood cell count (1) LD for children Hand numbness (2) Persistent abdominal pain (1) Severe abdominal pain (1) NOTE. N ⫽ 27.
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Table 4. Summary of Patient-Reported Immediate Complications Not Reported in the Medical Record LD for adults Constipation or delay in return to normal bowel function (2) Persistent abdominal pain (1) Short-term memory loss (1) Staphylococcus infection of the throat (1)* Brachial plexus injury (1) Foot paresthesias (1) Fluid between lung and liver (1)† LD for children Hand numbness (2) Persistent abdominal pain (1) Severe abdominal pain (1) NOTE. N ⫽ 27. *Sore throat related to endotracheal tube documented by physicians in medical record. †Seroma visualized in radiographic images.
percent of donors received good or excellent information before donation. Functional Status
Complications requiring readmission were reported by 22% and included biloma, fever, pancreatitis, loculated pleural effusion, emesis, and chronic abdominal pain (Table 3). Medical records of respondents were reviewed. Of the 19 complications reported by LDs, 60% were documented in the medical record (Table 4). When asked about their surgical experience, 33% experienced more pain than anticipated, and 37% reported a larger surgical scar than expected. However, 94% of donors reported a clear understanding of all complications before informed consent. Ninety-three percent of LDs reported that they understood the donation process completely before surgery. Eighty-nine
Table 3. Summary of Diagnosis Requiring Readmission LD for adults Loculated pleural effusion requiring chest-tube placement (1) Persistent abdominal pain, nondiagnostic workup (1) Biloma (1) Fever, nausea (1) LD for children Nausea, vomiting, and stress (1) Pancreatitis (1) NOTE. N ⫽ 27.
Donors reported a mean time to complete recovery of 12 weeks (range, 1 to 52 weeks). Compared with what they expected before surgery, 33% of LDs reported that it took more time than expected to completely recover. Of all donors, 80% have returned to their previous level of physical activity, and 80% have returned to their previous level of social activity. Eighty-five percent of LDs report current mood or emotions are the same or better compared with before surgery. A decrease in sexual activity was reported by 15%. Ninety-two percent of LDs returned to their predonation occupation. Of the two LDs unable to return to work, one was the mother of a transplant recipient who had a complicated transplantation requiring extended hospitalization, and the other developed chronic fatigue syndrome. Donors were not asked to quantify recovery time necessary before return to predonation occupation. Of 15 women of childbearing age, 5 women reported pregnancy after donation. There was no statistically significant difference between donor SF-12 scores (52.77 ⫾ 1.57) and general US population norms (50.12 ⫾ 9.45; P ⫽ .14). Overall Satisfaction Recipient improvement was reported by 88% of LDs after transplantation. Regardless of recipient outcome, 100% of donors would donate again and all would
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recommend LDLT to someone in contemplation. When asked whether living donation should be a routine option in the treatment of liver disease, 88% of LDs agreed or strongly agreed, 6% of LDs, were neutral, and 6% disagreed. When expressing needs or complaints while in the hospital, all 27 LDs believed that the transplant team responded. However, 8% of donors believed that the transplant team inadequately responded to their needs or complaints after hospital discharge. Ninety-six percent of LDs did not feel forced, pressured, or coerced to donate. One donor (3%) for a pediatric recipient was neutral about the pressure of donation, with a response of 3 on a five-point Likert scale.
Discussion Our study shows that surveyed LDs are satisfied with their donation decision and would choose to donate again if given the chance. However, our donors reported a 40% overall complication rate and a 22% readmission rate. Previous studies from the physician perspective reported complication rates of 0% to 67%. This broad range of reported morbidity likely is caused by lack of consensus on the definition of a complication. Early studies reported larger morbidity rates, in part because of the initial experience and learning curve of the surgical procedure. Unlike previous LDLT reports, we have elected to define a complication from the donor perspective to obtain detailed information on needs, concerns, and experiences of LDs. Many complications reported by LDs would be considered trivial by healthcare providers and therefore may not be reported in descriptions of LDLT outcomes. Several of these reported complications are expected postoperative issues and would not be categorized by healthcare providers as reportable objective surgical complications requiring intervention. Nearly 40% of donor-reported complications are not noted in the medical record. However, because these complications are important to our donors, they may need to be more frankly included in the informed consent process and preoperative education efforts. Other patient-reported complications have unclear causes that cannot be confirmed in the medical record. This may be a result of misunderstanding communicated information, and although trivial to healthcare providers, impacts on the way donors view their experience. Our adult-to-adult right-lobe donors reported a 64% complication rate. Outcomes specific to adult-toadult LDs using the right lobe have been sparse despite increasing interest in the procedure.5,19 A survey of 30
North American transplant centers that performed 208 adult-to-adult LDLTs reported an overall donor complication rate of 10%.20 Our LD complications do not differ from the experience described in this national survey with respect to the incidence of biliary leak, pressure ulcers, incisional hernia, pulmonary embolus, pneumonia, and pleural effusions.21 Our high reported complication rate in adult-to-adult right-lobe donors likely reflects inconsistencies between what donors and transplant teams consider complications. The reported complication rate may be greater in adult-to-adult right-lobe LDs than pediatric LDs because of the nature of the extensive surgery.21 Additionally, adult-to-adult donors might expect better outcomes than parents who are motivated to save their child’s life. Parental donors might minimize their own perioperative needs as they focus on their ill child’s outcomes. Our donors reported no significant change in physical activity, social activity, or emotional stability after donation surgery. Thirty-three percent of all women of childbearing age proceeded to have a child after LDLT. Additionally, our donors scored higher than the general public on the SF-12, a measure of health-related quality of life, although this difference is not statistically significant. Because LDs are chosen, in part, for their health, they could have decreased quality of life after surgery and still be above the general population mean. These findings support a recent report of donor quality of life after right-lobe LDLT from the University of Colorado that used the Medical Outcomes Study 36-Item ShortForm Survey (SF-36) to assess physical functioning, social functioning, and mental health.22 Our study has several strengths. This is the first assessment of adult-to-adult right-lobe and adult-topediatric LDs from the donor perspective. The mean follow-up of 20 months provides the opportunity for long-term assessment of donor needs, concerns, and experiences. Our high response rate makes bias caused by differential participation unlikely. Review of medical records allowed us to identify documented complications from both the donor and provider perspectives. Certain limitations are inherent to any descriptive survey study. The emotional nature of the decision to donate may color the way in which perioperative events are viewed. Expected outcomes of the recipient and relationship of the recipient to donor are likely to have a role in the way events are recalled. Complications considered important to donors might change as time from the donation surgery passes. However, donor perception of the donation experience is equally as important the further they are from surgery because it is a decision they live with for the rest of their lives. Addi-
Donor Outcomes After Living Donor Liver Transplantation
tionally, because all participants are from one transplant center, participants may vary from the national population of LDs. Three donors were excluded from participation in this study; one donor died and two donors failed to donate. Although ideally, we would have included the perspective of a proxy for the donor who died, we were precluded for medical-legal reasons. Failed donors were excluded to allow a study focus on complications related to completed right or left lobectomy over time. However, the perspective of failed donors is equally important and should be included in future research regarding LD outcomes. All surveyed LDs at our institution are satisfied with their donation decision despite complications and would choose to donate again if given the chance. Although our donors report a 40% overall complication rate, postoperative functional status is equal to or greater than population norms. We believe these results will lead to direct interventions to improve the informed-consent process, target potential donors, and maximize the donor experience. A consensus definition of reportable morbidity that includes issues and events important to donors themselves is necessary. We recommend that the national database on LDs include donor-identified outcomes to provide more accurate uniform information about our national experience with LDLT.
Acknowledgment The authors thank Drs Nicholas Shaheen and Robert Devellis and members of the University of North Carolina Epidemiology Group for their thoughtful input.
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References 1. United Network of Organ Sharing. Scientific Data Registry, 2000. Rockville, MD: Department of Health and Human Services, Health Resources and Services Administration. 2. Tojimbara T, Fuchinoue S, Nakajima I. Analysis of the risk and surgical stress for donors in living-related liver transplantation. Transplant Proc 1999;31:507-508. 3. Grewal H, Thistlethwaite J, Loss G, Fisher JS, Cronin DC, Siegel CT, et al. Complications in 100 living-liver donors. Ann Surg 1998;228:214-219. 4. Yamaoka Y, Morimoto T, Inamoto T, Tanaka A, Honda K, Ikai I, et al. Safety of the donor in living-related liver transplantation:
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21. 22.
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An analysis of 100 parental donors. Transplantation 1995;59: 224-226. Fan ST, Lo CM, Liu CL, Yong BH, Chan JK, Ng IO. Safety of donors in live donor liver transplantation using right lobe grafts. Arch Surg 2000;135:336-340. Broelsch CE, Malago M, Testa G, Gamazo C. Living donor liver transplantation in adults: Outcome in Europe. Liver Transpl 2000;6(suppl):S64-S65. Pomfret E, Pomposelli J, Lewis W, Gordon F, Burns DL, Lally M, et al. Live donor adult liver transplantation using right lobe grafts: Donor evaluation and surgical outcome. Arch Surg 2001; 136:425-433. Park KM, Lee SG, Lee YJ, Hwang S, Nam CW, Choi KM, et al. Adult-to-adult living donor liver transplantation at Asian Medical Center, Seoul, Korea. Transplant Proc 1999;31:456-458. Wachs M, Bak T, Karrer F, Everson GT, Shrestha R, Trouillot TE, et al. Adult living donor liver transplantation using a right hepatic lobe. Transplantation 1998;66:1313-1316. Ohkohchi N, Katoh H, Orii T, Fujimori K, Shimaoka S, Satomi S. Complications and treatments of donors and recipients in living-related liver transplantation. Transplant Proc 1998;30: 3218-3220. Malago M, Burdelski M, Broelsch CE. Present and future challenges in living related liver transplantation. Transplant Proc 1999;31:1777-1781. Inomata Y, Tanaka K, Uemoto S, Asonuma K, Igawa H, Kiuchi T, et al. Living donor liver transplantation: An 8-year experience with 379 consecutive cases. Transplant Proc 1999;31:381. Broelsch CE, Whitington P, Edmond J, Heffron TG, Thistlethwaite JR, Stevens L, et al. Liver transplantation in children from living related donors. Ann Surg 1991;214:428-439. Emond J, Rosenthal P, Roberts J, Stock P, Kelley S, Gregory G, et al. Living related liver transplantation: The UCSF experience. Transplant Proc 1996;28:2375-2377. Lee KH, Tan KC. Whither living donor liver transplantation? Liver Transpl 2000;6:387. Strong RW. Whither living donor liver transplantation? Liver Transpl Surg 1999;5:536-538. Hirano I, Blei AT. Deaths after living related liver transplantation [letter]. Liver Transpl 2000;6:250. Abecasis M, Adams M, Adams P, Arnold RM, Atkins CR, Barr ML, et al. Consensus statement on the live organ donor. JAMA 2000;284:2919-2926. Marcos A, Ham JM, Fisher RA, Olzinski AT, Posner MP. Single-center analysis of the first 40 adult-to-adult living donor liver transplants using the right lobe. Liver Transpl 2000;6:296-301. Renz JF, Mudge C, Heyman M. Donor selection limits use of living related liver transplantation. Hepatology 1995;22:11221126. Renz JF, Roberts J. Long-term complications of living donor liver transplantation. Liver Transpl 2000;6(suppl):S73-S76. Trotter JF, Talamantes M, McClure M, Wachs M, Bak T, Trouillot TE, et al. Right hepatic lobe donation for living donor liver transplantation: Impact on donor quality of life. Liver Transpl 2001;7:485-493.
The Living Donor Experience: Donor Health Assessment and Outcomes After Living Donor Liver Transplantation Kimberly L. Beavers,* Robert S. Sandler,* Jeffrey H. Fair,† Mark W. Johnson,† and Roshan Shrestha* Despite the increasing use of living donor liver transplantation, little is known about donor needs, concerns, and experiences. The goal of this study is to assess morbidity associated with living donation from a donor perspective, functional status after donation, and overall satisfaction with the donation process. We surveyed all living donors (LDs) from our center. Demographics, perioperative experience, and satisfaction with donation were assessed. The Medical Outcomes Study 12-Item Short-Form Survey (SF-12), a well-validated tool, measured overall health-related quality of life. Of 27 subjects eligible for the study, 27 subjects (100%) participated. Forty percent reported an event they deemed an immediate complication, of which 60% were recorded in the medical record. Complications requiring readmission were reported by 22%. Mean recovery time was 12 weeks (range, 1 to 52 weeks). No significant change was reported in physical activity, social activity, or emotional stability, and 92% of donors resumed their predonation occupation. Regardless of recipient outcome, 100% of donors would donate again and recommend donation to someone in contemplation. All surveyed LDs at our institution are satisfied with their donation decision. Morbidity in the first year after donation may be greater than previously appreciated. Despite complications, postoperative functional status of donors is equal to or better than population norms. (Liver Transpl 2001;7:943-947.)
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ince the introduction of living donor liver transplantation (LDLT) in 1989, nearly 2,000 LDLTs have been performed worldwide.1 Previous data regarding living donors (LDs) reported morbidity rates of 0% to 67%.2-14 Because several of these reports were based primarily on early pediatric and adult left-lobe hepatectomy without long-term follow-up, the full extent of risk to LDs is not known. The medical community has raised concerns regarding the safety and ethics of LDLT as the application of living donation in this country increases.5,15-17 A workshop to address these issues, The National Institutes of Health Workshop on Living Donor Liver Transplantation, was held in Bethesda, MD, in December 2000. It is important that potential donors receive accurate and unbiased information on the risks of donor surgery.18 However, ensuring that prospective LDs have sufficient understanding of potential complications
before giving valid informed consent may be problematic because complications important to donors and long-term risks associated with donation are not known. Although several reports addressed surgical complications, no published study to date addressed issues specific to functional outcomes or complications from the donor perspective in both adult and pediatric LDLT. The goal of this study is to assess morbidity associated with LDLT from the donor perspective, functional status after donation surgery, and overall donor satisfaction with the donation process.
Materials and Methods We surveyed all LDs at our transplant center from September 1996 to October 2000. We excluded three donors: one donor whose surgery was aborted when the recipient decompensated, one donor whose surgery was aborted when noncaseating granulomas were identified at the donor’s porta hepatis, and one donor who died of sepsis after donation surgery. All subjects were assigned a study identification number at the time of enrollment, and all study materials used only this number as an identifier. The Institutional Review Board of the University of North Carolina (Chapel Hill, NC) approved this protocol. Each subject completed a mailed questionnaire assessing demographic information, informed consent, preoperative experience, surgical experience, postoperative experience, and overall satisfaction of liver donation (survey available from authors on request). The 50-item survey was initially constructed by the transplant team at our center after review of
From the Departments of *Medicine and †Surgery, University of North Carolina School of Medicine, Chapel Hill, NC. Supported in part by grant no. T32 07634 from the National Institutes of Health. Address reprint requests to Roshan Shrestha, MD, Associate Professor of Medicine, Medical Director of Liver Transplantation, CB #7080, 709 Burnett-Womack Bldg, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7080. Telephone: 919-966-2516; FAX: 919-966-1700; E-mail: [email protected] Copyright © 2001 by the American Association for the Study of Liver Diseases 1527-6465/01/0711-0003$35.00/0 doi:10.1053/jlts.2001.28443
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Table 1. Patient Characteristics
Characteristic Women (%) Mean age at donation (yr) Mean follow-up at time of survey completion (mo) Education beyond high school (%) Relationship to recipient Mother Father Son Daughter Sibling Extended family and friends First learned of LDLT Family Television Newspaper Gastroenterologist Transplant team Primary care provider Mean hospital stay (d) Mean complete recovery time (wk) Reported immediate complication (%) Readmitted to hospital (%) Reported recipient improvement (%) Would donate again (%) Recommend LDLT to someone considering donation (%)
the living donor kidney transplantation and adult-to-pediatric LDLT literature. The initial instrument was pretested by administration to a trial group of three donors, then revised with psychometric expertise. The majority of question responses used a five-point Likert scale. Questions regarding complications and time to recovery were open-ended. Additionally, each donor was administered the Medical Outcomes Study 12-Item Short-Form Survey (SF-12), a well-validated 12-question measure of health-related quality of life that yields summary outcome scores that can be compared with population norms. If the donor did not respond to the mailed survey request within 8 weeks, he or she received a phone call to explain the study, answer questions, and seek participation in a telephone interview. Additionally, medical records of each subject were reviewed to assess documented complications. Data analysis was performed using Stata version 6 (Stata Corp, College Station, TX). Descriptive statistics were calculated using simple contingency table methods. Chi-squared test and t-test were used for categorical data and continuous data, respectively.
Results All subjects eligible for the study participated. Twentyone participants completed a written survey, and six
All Donors (n ⫽ 27)
Adult-to-Adult Right-Lobe Donors (n ⫽ 14)
67 35 (18-50) 20 (1.5-48) 48
57 39 (27-50) 13 (2-30) 57
7 4 2 4 4 6 9 3 5 4 4 2 8 (3-14) 12 (1-52) 40 22 89 100 100
0 0 2 4 4 4 5 3 4 0 1 1 9 (6-14) 18 (4-52) 64 29 86 100 100
patients completed telephone interviews. Characteristics of subjects are listed in Table 1. The donor population included 67% women, with a mean age of 35 years (range, 18 to 50 years). Fifty-two percent of respondents donated right lobes to adult recipients. Mean follow-up at the time of survey completion was 20 months (range, 1.5 to 48 months). Morbidity The mean hospital stay was 8 days (range, 3 to 14 days). Ninety-two percent of LDs reported that their hospital stay was shorter than expected or as expected. Eight donors were administered an autologous blood transfusion; one donor (3.7%) required a nonautologous blood transfusion in addition to their autologous blood. In response to an open-ended question, 40% of donors reported at least one event that they deemed an immediate complication (Table 2). Delay in return to normal bowel function was the most frequently reported complication (n ⫽ 5); others included pain, brachial plexus injury, blood clot, incisional infection, pleural effusion, sore throat, foot paresthesias, persistent short-term memory loss, chronic fatigue, “fluid between lung and liver,” and bile leak (n ⫽ 1 each).
Donor Outcomes After Living Donor Liver Transplantation
Table 2. Summary of Immediate Complications Not Related to Hospital Readmission as Reported by Patients LD for adults Constipation or a delay in return to normal bowel function (5) Severe abdominal pain (1) Persistent abdominal pain (1) Incision pain/loss of sensation below incision line (1) Blood clot (1) Persistent short-term memory loss (1) Chronic fatigue syndrome (1) Pleural effusion (1) Staphylococcus infection of the throat (1) Brachial plexus injury (1) Foot paresthesias (1) Fluid between lung and liver (1) Bile leak (1) Fever and elevated white blood cell count (1) LD for children Hand numbness (2) Persistent abdominal pain (1) Severe abdominal pain (1) NOTE. N ⫽ 27.
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Table 4. Summary of Patient-Reported Immediate Complications Not Reported in the Medical Record LD for adults Constipation or delay in return to normal bowel function (2) Persistent abdominal pain (1) Short-term memory loss (1) Staphylococcus infection of the throat (1)* Brachial plexus injury (1) Foot paresthesias (1) Fluid between lung and liver (1)† LD for children Hand numbness (2) Persistent abdominal pain (1) Severe abdominal pain (1) NOTE. N ⫽ 27. *Sore throat related to endotracheal tube documented by physicians in medical record. †Seroma visualized in radiographic images.
percent of donors received good or excellent information before donation. Functional Status
Complications requiring readmission were reported by 22% and included biloma, fever, pancreatitis, loculated pleural effusion, emesis, and chronic abdominal pain (Table 3). Medical records of respondents were reviewed. Of the 19 complications reported by LDs, 60% were documented in the medical record (Table 4). When asked about their surgical experience, 33% experienced more pain than anticipated, and 37% reported a larger surgical scar than expected. However, 94% of donors reported a clear understanding of all complications before informed consent. Ninety-three percent of LDs reported that they understood the donation process completely before surgery. Eighty-nine
Table 3. Summary of Diagnosis Requiring Readmission LD for adults Loculated pleural effusion requiring chest-tube placement (1) Persistent abdominal pain, nondiagnostic workup (1) Biloma (1) Fever, nausea (1) LD for children Nausea, vomiting, and stress (1) Pancreatitis (1) NOTE. N ⫽ 27.
Donors reported a mean time to complete recovery of 12 weeks (range, 1 to 52 weeks). Compared with what they expected before surgery, 33% of LDs reported that it took more time than expected to completely recover. Of all donors, 80% have returned to their previous level of physical activity, and 80% have returned to their previous level of social activity. Eighty-five percent of LDs report current mood or emotions are the same or better compared with before surgery. A decrease in sexual activity was reported by 15%. Ninety-two percent of LDs returned to their predonation occupation. Of the two LDs unable to return to work, one was the mother of a transplant recipient who had a complicated transplantation requiring extended hospitalization, and the other developed chronic fatigue syndrome. Donors were not asked to quantify recovery time necessary before return to predonation occupation. Of 15 women of childbearing age, 5 women reported pregnancy after donation. There was no statistically significant difference between donor SF-12 scores (52.77 ⫾ 1.57) and general US population norms (50.12 ⫾ 9.45; P ⫽ .14). Overall Satisfaction Recipient improvement was reported by 88% of LDs after transplantation. Regardless of recipient outcome, 100% of donors would donate again and all would
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recommend LDLT to someone in contemplation. When asked whether living donation should be a routine option in the treatment of liver disease, 88% of LDs agreed or strongly agreed, 6% of LDs, were neutral, and 6% disagreed. When expressing needs or complaints while in the hospital, all 27 LDs believed that the transplant team responded. However, 8% of donors believed that the transplant team inadequately responded to their needs or complaints after hospital discharge. Ninety-six percent of LDs did not feel forced, pressured, or coerced to donate. One donor (3%) for a pediatric recipient was neutral about the pressure of donation, with a response of 3 on a five-point Likert scale.
Discussion Our study shows that surveyed LDs are satisfied with their donation decision and would choose to donate again if given the chance. However, our donors reported a 40% overall complication rate and a 22% readmission rate. Previous studies from the physician perspective reported complication rates of 0% to 67%. This broad range of reported morbidity likely is caused by lack of consensus on the definition of a complication. Early studies reported larger morbidity rates, in part because of the initial experience and learning curve of the surgical procedure. Unlike previous LDLT reports, we have elected to define a complication from the donor perspective to obtain detailed information on needs, concerns, and experiences of LDs. Many complications reported by LDs would be considered trivial by healthcare providers and therefore may not be reported in descriptions of LDLT outcomes. Several of these reported complications are expected postoperative issues and would not be categorized by healthcare providers as reportable objective surgical complications requiring intervention. Nearly 40% of donor-reported complications are not noted in the medical record. However, because these complications are important to our donors, they may need to be more frankly included in the informed consent process and preoperative education efforts. Other patient-reported complications have unclear causes that cannot be confirmed in the medical record. This may be a result of misunderstanding communicated information, and although trivial to healthcare providers, impacts on the way donors view their experience. Our adult-to-adult right-lobe donors reported a 64% complication rate. Outcomes specific to adult-toadult LDs using the right lobe have been sparse despite increasing interest in the procedure.5,19 A survey of 30
North American transplant centers that performed 208 adult-to-adult LDLTs reported an overall donor complication rate of 10%.20 Our LD complications do not differ from the experience described in this national survey with respect to the incidence of biliary leak, pressure ulcers, incisional hernia, pulmonary embolus, pneumonia, and pleural effusions.21 Our high reported complication rate in adult-to-adult right-lobe donors likely reflects inconsistencies between what donors and transplant teams consider complications. The reported complication rate may be greater in adult-to-adult right-lobe LDs than pediatric LDs because of the nature of the extensive surgery.21 Additionally, adult-to-adult donors might expect better outcomes than parents who are motivated to save their child’s life. Parental donors might minimize their own perioperative needs as they focus on their ill child’s outcomes. Our donors reported no significant change in physical activity, social activity, or emotional stability after donation surgery. Thirty-three percent of all women of childbearing age proceeded to have a child after LDLT. Additionally, our donors scored higher than the general public on the SF-12, a measure of health-related quality of life, although this difference is not statistically significant. Because LDs are chosen, in part, for their health, they could have decreased quality of life after surgery and still be above the general population mean. These findings support a recent report of donor quality of life after right-lobe LDLT from the University of Colorado that used the Medical Outcomes Study 36-Item ShortForm Survey (SF-36) to assess physical functioning, social functioning, and mental health.22 Our study has several strengths. This is the first assessment of adult-to-adult right-lobe and adult-topediatric LDs from the donor perspective. The mean follow-up of 20 months provides the opportunity for long-term assessment of donor needs, concerns, and experiences. Our high response rate makes bias caused by differential participation unlikely. Review of medical records allowed us to identify documented complications from both the donor and provider perspectives. Certain limitations are inherent to any descriptive survey study. The emotional nature of the decision to donate may color the way in which perioperative events are viewed. Expected outcomes of the recipient and relationship of the recipient to donor are likely to have a role in the way events are recalled. Complications considered important to donors might change as time from the donation surgery passes. However, donor perception of the donation experience is equally as important the further they are from surgery because it is a decision they live with for the rest of their lives. Addi-
Donor Outcomes After Living Donor Liver Transplantation
tionally, because all participants are from one transplant center, participants may vary from the national population of LDs. Three donors were excluded from participation in this study; one donor died and two donors failed to donate. Although ideally, we would have included the perspective of a proxy for the donor who died, we were precluded for medical-legal reasons. Failed donors were excluded to allow a study focus on complications related to completed right or left lobectomy over time. However, the perspective of failed donors is equally important and should be included in future research regarding LD outcomes. All surveyed LDs at our institution are satisfied with their donation decision despite complications and would choose to donate again if given the chance. Although our donors report a 40% overall complication rate, postoperative functional status is equal to or greater than population norms. We believe these results will lead to direct interventions to improve the informed-consent process, target potential donors, and maximize the donor experience. A consensus definition of reportable morbidity that includes issues and events important to donors themselves is necessary. We recommend that the national database on LDs include donor-identified outcomes to provide more accurate uniform information about our national experience with LDLT.
Acknowledgment The authors thank Drs Nicholas Shaheen and Robert Devellis and members of the University of North Carolina Epidemiology Group for their thoughtful input.
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