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. Author manuscript; available in PMC: 2015 May 1.
Published in final edited form as: Liver Transpl. 2015 May;21(5):670–682. doi: 10.1002/lt.24108

Patterns and Predictors of Sexual Function After Liver Donation: the Adult to Adult Living Donor Liver Transplantation Cohort Study (A2ALL)

AF DiMartini 1,2, MA Dew 1,3,4,5, Z Butt 6,7,8,9, MA Simpson 10, DP Ladner 6,7,8,11, AR Smith 12,13, P Hill-Callahan 13, BW Gillespie 12
PMCID: PMC4412809  NIHMSID: NIHMS673544  PMID: 25779554

Abstract

Although sexual functioning is an important facet of living donor quality of life, it has not received extensive evaluation in this population. Using data from the Adult-to-Adult Living Donor Liver Transplantation Cohort Study, we examined donor sexual functioning across the donation process from the predonation evaluation to 3 months and 1 year postdonation. Donors (n=208) and a comparison group of non-donors (n=155) completed self-reported surveys with specific questions on sexual desire, satisfaction, orgasm, and (for men) erectile function. Across the three time points, donor sexual functioning was lower at the evaluation phase and 3 months postdonation than at one year postdonation. In the early recovery period, abdominal pain was associated with difficulty reaching orgasm (OR = 3.98, 95% CI 1.30–12.16), concerns over appearance with lower sexual desire (OR = 4.14, 95% CI 1.02–16.79), and not feeling back to normal was associated with dissatisfaction with sexual life (OR 3.58, 95% CI 1.43–8.99). Efforts to educate donors before the surgery and prepare them for the early recovery phase may improve recovery and reduce distress regarding sexual functioning.

Keywords: Sexual Functioning After Donation, Patient Reported Outcomes, Quality of Life, Living Donor Liver Transplantation, Living Liver Donors, Adult to Adult Living Donor Liver Transplant Cohort Study (A2ALL)

Introduction

Living liver donors offer a portion of their own healthy liver to save the life of another. As donors make a personal sacrifice to enhance the welfare of another, efforts to prevent adverse health and quality of life outcomes are essential. Much has been written about health-related quality of life (HRQOL) of donors, their typically high levels of functioning pre- and postdonation, and their often quick physical recovery(17). However, to date there has been little examination of donor sexual functioning through the donation process. A single center study that included one question about whether donation had affected sexual function or intimacy showed nearly 50% of donors reported worsened sexual functioning one week to one month following donation, but most reported a return to baseline at 3 months postdonation(2). A retrospective cross-sectional survey of liver donors’ HRQOL asking a single question of sexual functioning found those who reported a lower perception of body image and cosmesis reported significantly greater interference in their sex lives(8).

Thus, with the intent to identify the scope and extent of donor sexual concerns, we examined donor sexual functioning before and after donation from the multi-site Adult-to-Adult Living Donor Liver Transplantation Cohort Study (A2ALL). The purpose of our study was to 1) describe the sexual functioning of liver donors, including changes through the first year following donation and 2) evaluate whether and to what extent donation-related factors (e.g., self-reported recovery from the surgery, physical symptoms, pain, appearance, and health concerns) were associated with poorer sexual functioning.

Methods

Study design and cohort definitions

The A2ALL consortium consisted of nine North American transplant centers with data collected on potential living liver donors and their recipients. Patients were recruited from 2004 to 2009 with follow-up through August 2010. All individuals evaluated for living liver donation at these centers were asked to complete HRQOL surveys, including sexual functioning questions. Potential donors could enter the study during the donor evaluation process or at a later time point if they were already postdonation. Surveys were administered at evaluation, and at 3 months and 1 year postdonation as well as at evaluation, and 3 months and 12 months postevaluation for those who did not donate (non-donors). For participants who enrolled after donation, the surveys were administered according to the protocol visit schedule starting with the visit window after donation. Clinical information, including data on donor hospitalizations, complications, and recipient outcomes, was collected from the medical record supplemented with data from the Scientific Registry of Transplant Recipients (SRTR).

Of the 971 consenting potential donors, 170 were excluded because they enrolled in the A2ALL protocol more than 2 years after donation or evaluation and were beyond the time points of interest (Figure 1). An additional 142 non-donating candidates were excluded due to factors that may have made their reports of sexual functioning less comparable to actual donors; for example, those who declined to donate or were rejected as donors for medical or psychosocial contraindications. Of the remaining 659 who were eligible to be donors, 293 were donors and 366 were non-donors. Non-donors did not donate mostly due to recipient (e.g., recipient received a deceased donation) or anatomical reasons. Surveys were completed at the evaluation phase before knowing that the non-donors would not donate. We chose non-donors to be the control group as they would be similar to the donor group with respect to health and psychological functioning. Donors are healthier than the general population of age-matched individuals, as they are specifically screened to not have medical or psychosocial issues. Thus, a comparable group would be eligible donors who eventually did not donate mostly due to recipient reasons, and not because they had medical or psychological issues that prevented them from donating. Of those, 208 donors (71%) and 155 non-donors (42%) completed at least one sexual functioning questionnaire and were included in the analyses. There were no statistical differences between responders and non-responders on demographics or for donors on postdonation factors (complications, hospitalizations, or recipient death/retransplantation).

Figure 1. Study Flow Diagram.

Figure 1

Study flow diagram showing number of donors consented, excluded from analysis due to ineligibility, and number of subjects with (analyzed) and without (not analyzed) sexual functioning survey responses in the first year postdonation.

Human Subjects Protection

The A2ALL study, which collected the data in the present report, was approved by the Institutional Review Boards and Privacy Boards of the University of Michigan Data Coordinating Center and each of the nine participating transplant centers. All participants provided written informed consent.

Instruments and Measures (see Table 1)

Table 1.

Donor Survey Questions and Sources

Sexual Functioning Questions
Content Area
  • Desire or interest

Specific Questions
  • Over the past month, how often did you feel sexual desire or interest?

    • Almost always or always

    • Most times (more than half the time)

    • Sometimes (about half the time)

    • A few times (less than half the time)

    • Almost never or never

Source For female questions: Rosen R, Brown C, Heiman J, Leiblum S, Meston C, Shabsigh R, Ferguson D and D’Agostino R. The Female Sexual Function Index (FSFI):A Multidimensional Self-Report Instrument for the Assessment of Female Sexual Function. Journal of Sex & Marital Therapy, 26:191–208, 2000.
 For male questions: Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J and Mishra A. The International Index of Erectile Function (IEEF): A Multidimensional Scale for Assessment of Erectile Dysfunction Urology 49: 822–830, 1997.
  • Orgasm/ejaculate

  • Over the past month, when you had sexual stimulation or intercourse, how often did you reach orgasm (climax)/ejaculate?

    • Almost always or always

    • Most times (more than half the time)

    • Sometimes (about half the time)

    • A few times (less than half the time)

    • Almost never or never

    • No sexual stimulation/intercourse

  • Satisfaction with sexual life

  • Over the past month, how satisfied have you been with your overall sexual life?

    • Very satisfied

    • Moderately satisfied

    • About equally satisfied and dissatisfied

    • Moderately dissatisfied

    • Very dissatisfied

Scoring For questions on desire, orgasm/ejaculate and erection
  • Poorer functioning = sometimes, a few times, almost never/never


 For satisfaction question
  • Poorer functioning = about equally satisfied/dissatisfied, moderately dissatisfied, very dissatisfied

  • Ability to get an erection (for men only)

  • Over the past month, how often were you able to get an erection during sexual activity?

    • Almost always or always

    • Most times (more than half the time)

    • Sometimes (about half the time)

    • A few times (less than half the time)

    • Almost never or never

    • No sexual activity


Postdonation Covariates:
Donation Specific Worries

Content Area
  • Worries about health related to donation

Specific Questions
  • How often do you worry about the physical effects on you of having donated a part of your liver?

    • Often

    • Sometimes

    • Almost never

  • Would you say you are…

    • Very worried about your own health now

    • Somewhat worried

    • A little worried

    • Not at all worried about your own health now

  • Sometimes I worry that the liver donation will have negative effects on my health in the future.

    • Strongly agree

    • Agree

    • Disagree

    • Strongly disagree

  • Since my liver donation, I worry that I will never feel physically 100% well again.

    • Strongly agree

    • Agree

    • Disagree

    • Strongly disagree

Source Simmons RG, Simmons RL, Marine SK. Gift of life: The effect of organ transplantation on individual, family, and societal dynamics. New Brunswick, N.J., USA: Transaction Books, 1987.

Physical Appearance, Symptoms and Recovery

Content Area
  • Bodily appearance

Specific Questions
  • Compared to before donation, my general or overall physical appearance now is:

    • Much worse

    • Worse

    • The same

    • Better

    • Much better

Source Survey items created by A2ALL investigators to capture these donation specific issues
  • Abdominal pain and bowel symptoms

  • Abdominal pain interferes with my daily life

    • Never

    • Rarely

    • Sometimes

    • Often

    • Always

  • The amount of abdominal pain I have today is

    • None

    • Mild

    • Moderate

    • Severe

    • Very severe

  • Extent of recovery

  • My bowel symptoms interfere with daily life

    • Never

    • Rarely

    • Sometimes

    • Often

    • Always

  • Do you feel completely recovered now?

    • Yes

    • No

  • If no, how would you rate your percentage of recovery now?

    • 81–100%

    • 61–80%

    • 41–60%

    • 21–40%

    • 0–20%

  • Compared to what I expected, my recovery has been:

    • Much slower

    • Slower

    • As expected

    • Faster

    • Much faster

  • Physically, do you feel back to normal?

    • Yes

    • No


Depression symptoms

  • In the past two weeks, have you been much less interested in most things or much less able to enjoy the things you used to enjoy most of the time?

    • Yes

    • No

  • Have you been consistently depressed or down, most of the day, nearly every day, for the past two weeks?

    • Yes

    • No

 Mini-International Neuropsychiatric Interview (Sheehan 1998).

Surveys were self-administered. The questions were preceded by a statement that responses would be kept confidential and not revealed to the transplant team.

Sexual functioning questions

Of the component parts of sexual activity, desire, erectile function (for men), and overall sexual satisfaction are considered some of the most important dimensions of sexual functioning(9). Self-report surveys are considered one of the most valid ways to assess sexual functioning(9). Specific questions addressing each of these areas for men and women were developed and validated by expert sexuality researchers (911), and have been used in studies of sexual functioning following general and urological/gynecological surgery (1214). Donors were surveyed using four of these questions covering core sexual functioning areas: three assessed both men and women (orgasmic function, desire, and overall satisfaction), and a fourth item assessed in men (erectile function). The time frame for each item was the prior month. We dichotomized responses on each sexual functioning item into those endorsing the item half the time or less (poorer sexual functioning) versus those endorsing better sexual functioning. For questions about erectile and orgasmic function, responses of no sexual activity (either stimulation or intercourse) were included in the poorer functioning group. The question on satisfaction with sex life was dichotomized as satisfied versus neutral or dissatisfied.

Postdonation covariates: symptoms and concerns

Postdonation surveys included items on recovery (fully recovered versus not), physically back to normal (yes versus no), pain (any versus none), pain interference with functioning (any versus never), bowel symptoms interfering with functioning (any versus never), and physical appearance (same/better versus worse). Symptoms of depression were elicited using two screening questions from the Mini-International Neuropsychiatric Interview (15) on the two cardinal symptoms of depression required for the clinical diagnosis (present or not) (see Table 1).

Several validated instruments assessing donation-specific concerns (e.g., relationships, satisfaction with donation, health concerns related to donation) (16) have been used extensively in bone marrow(1720), kidney(21,22), and liver(23,24) donation research. From these instruments we chose health concerns related to the donation experience as the most relevant to sexual functioning. Four individual items representing the donation-related health concerns domain were assessed: the future negative effects of donation on health (agree versus disagree); worries about current health (any worries versus none); frequency of worries (often to sometimes versus almost never); and worries about never feeling physically 100% again (agree versus disagree).

Demographic and Donor Medical Outcomes

Basic demographics, the relationship to the actual/intended recipient, medical comorbidities, smoking status, and body mass index (BMI) were obtained from medical records. Marital/relationship status and educational level were asked by survey. For donors, data on liver lobe donated, medical complications (number and Clavien grade), number of re-hospitalizations, and recipient status at follow-up (alive, deceased, or re-transplanted) were collected from medical record review. Donors were asked about current pain medication usage. After donation, women were asked whether they were pregnant or attempting to become pregnant.

Data Considerations

The A2ALL cohort represents 79% of living donors from the corresponding era. Those who did and did not enroll in A2ALL were similar in age (37.4 ± 10.1 and 36.2 ± 10.3 years, p=0.43, respectively), and similar percents enrolled by gender (80% among females, 77% among males, p=0.53). However, white, native, and multiracial donors were more likely to enroll (82%) than blacks (63% of 16 donors) or Asians (36% of 14 donors), p=0.0004. Of the 208 donors analyzed, 122 completed the questionnaire at evaluation, 105 at 3 months, and 107 at 1 year postdonation. Eighty-two donors responded at evaluation and at least one postdonation time point of interest (3 months and/or 1 year postdonation). Of the 155 non-donors, 134 responded at evaluation, 21 at 3 months, and 13 at 1 year postevaluation. Only 13 non-donors responded at multiple time points and only 12 responded at evaluation and the one post-evaluation time point; thus, there were too few non-donors to consider in the longitudinal analyses. Among eligible donors and non-donors, there was no significant difference between those analyzed or excluded on the demographic variables in Table 2.

Table 2.

Characteristics of Living Liver Donors and Non-donors at Predonation Evaluation Stage

Actual Donors (n = 208) Non-Donors (n = 155) P-valueβ
(N) or Mean (S.D.) % (N) or Mean (S.D.)
Age at Evaluation 37.9 (10.2) 37.4 (10.6) .612
 18–29 27% (56) 30% (47)
 30–39 31% (64) 24% (37)
 40–49 27% (56) 35% (54)
 ≥50 15% (32) 11% (17)
Male 45% (94) 52% (80) .226
Hispanic 12% (24) 17% (26) .152
White 94% (195) 85% (131) .004
BMI at Evaluation 26.4 (4.1) 27.3 (5.3) .092
High School Education or Less* 23% (48) 22% (34) .854
Current or Previous Smoker 24% (49) 30% (46) .189
History of Depression 8% (16) 8% (13) .809
Dyslipidemia 7% (14) 7% (11) 0.89
Coronary Artery Disease 0% (0) 1% (1) 0.43
Pulmonary Disease 3% (6) 2% (3) 0.74
Diabetes <1% (1) 0% (0) 1.00
Hypertension 3% (7) 1% (2) 0.31
Relationship to Recipient .914
Biological 65% (136) 66% (103)
Non-biological, Spouse 6% (12) 6% (10)
Other non-biological 29% (60) 27% (42)
Married/Long-term partner 37% (77) 49% (76) .022
*

Missing in 10% of subjects.

β

Chi-square or t-test.

To maximize response rates, surveys were administered in several formats: on tablet computers (n=341), paper forms (n=157), or in a web-based format (n=4). There were no statistical differences between tablet versus paper formats for any of the sexual functioning questions.

Statistical Analysis

Characteristics of donors and non-donors were compared using t-tests for continuous variables and chi-squared or Fisher’s exact tests for categorical variables. Graphs of the proportion indicating poorer sexual function include standard error bars based on the binomial distribution.

Potential predictors of poor sexual function were first evaluated at each time point for each question. Both donors and non-donors were included in models at evaluation; only donors were included in postdonation models. Covariates considered included donation age, gender, race, ethnicity, relationship to recipient, marital status, education, BMI, smoking history, history and current symptoms of depression, and dyslipidemia. Diabetes, pulmonary disease, heart disease, and hypertension were uncommon and not tested. Covariates considered for the postdonation models additionally included lobe donated and measures from the given survey or earlier: number of hospitalizations, number of complications (overall and severity), medications for pain, recipient death or re-transplant, depressive symptoms, abdominal pain, bowel symptoms, concerns about appearance, and donation-related worries. Variable selection used the method of best subsets (24), with gender retained even if not significant. Results are presented as odds ratios with 95% confidence intervals.

To investigate changes in the probability of poorer sexual function following donation, repeated measures logistic models were fit to the subgroup with evaluation and at least one postdonation survey; a compound symmetry covariance structure was used. This method yields unbiased inference even if subjects have missing surveys at some timepoints, assuming the missing data mechanism is ignorable. Covariates considered above were tested, adjusting for gender and time point. The interactions between gender and time were tested but not found to be siginificant. Results are presented as predicted probabilities of poorer sexual function, with p-values given for tests of gender differences and pairwise time points differences. Predonation sexual function was also tested as a predictor of postdonation function using a similar model, but including predonation function as a covariate.

Results

Descriptive Results

Donors and non-donors were similar in most baseline demographic characteristics. They were predominately white, evenly divided between men and women, and were on average 38 years old (Table 2). Only 0%–3% had medical comorbidities of diabetes, pulmonary disease, heart disease, or hypertension. Dyslipidemia (7% of both groups) was not significantly associated with sexual functioning. The majority intended to donate to a biological relative, and a small percentage intended to donate to a spouse. Compared to non-donors, donors were more likely to be white and unmarried. Three female donors reported attempting to get pregnant in the year after donation.

Among donors, most donated the right lobe of their liver and, after the initial donation hospitalization, most were not hospitalized again during the first year (Table 3). Most complications occurred within the first 3 months, with 36% experiencing at least one complication within the first year. The highest grade complication was Clavien grade 2 (21% in the first year)(26). By 1 year, 5% of the living liver donor recipients had died and another 5% were retransplanted. Few donors reported symptoms of depression or concerns about appearance. However, bowel symptoms and pain were common. At 1 year, 40% reported bowel symptoms and 46% reported abdominal pain that interfered with everyday life. Nevertheless, at 1 year 75% felt back to normal. Most felt their recovery pace was as expected or faster. While few worried that they would never feel physically 100% again, at 3 months 35% were at least a little worried about their health and 42% worried about the physical effects of donation.

Table 3.

Postdonation Characteristics of Living Liver Donors¥

Month 3 (n = 105) Year 1 (n = 107)

%(N) %(N)
Medical Variables
Left Lobe Donor 8% (8) 7% (7)
Number of Hospitalizations*
0 87% (91) 87% (93)
1 10% (11) 7% (8)
 ≥2 3% (3) 6% (6)
≥1 Complication* 28% (29) 36% (39)
≥1 Complication Clavien Grade 2* 18% (19) 21% (22)
Postdonation Pain Medication Useβ 10% (11) 12% (13)
Recipient Died 3% (3) 5% (5)
Recipient Re-transplanted 4% (4) 5% (5)
Self-reported Variables£
Consistently depressed or down 5% (5) 3% (3)
Missing 14% (15) 22% (24)
Much less interested/able to enjoy things 9% (9) 4% (4)
Missing 16% (17) 24% (26)
General or overall appearance is worse/much worseδ 12% (13) 7% (8)
Self-reported medical problemsδ 21% (22) 16% (17)
Abdominal pain interferes with daily lifeδ 56% (59) 46% (49)
At least mild abdominal pain on the day of surveyδ 40% (42) 24% (26)
Bowel symptoms interfere with daily lifeδ 37% (39) 40% (43)
Feels completely recoveredδ 41% (43) 72% (77)
Recovered slower/much slower than expectedδ 24% (25) 18% (19)
Percent recoveryδ:
020% 1% (1) 1% (1)
4160% 4% (4) 0% (0)
6180% 18% (19) 6% (6)
8099% 32% (34) 19% (20)
100% 41% (43) 72% (77)
Feels back to normal 53% (56) 75% (80)
Missing 5% (5) 9% (10)
Worries sometimes or often about physical effects of donation 42% (44) 23% (25)
Missing 6% (6) 20% (21)
At least a little worried about own health 35% (37) 21% (22)
Missing 6% (6) 19% (20)
Worries donation will have negative effects on health in the future 27% (28) 16% (17)
Missing 6% (6) 21% (22)
Worries will never feel 100% well 14% (15) 7% (7)
Missing 6% (6) 21% (22)
¥

61 donors had information available at month 3 only, 63 at year 1 only, and 44 had both. Donors who only had month 3 differed significantly from those who only had year 1 data in terms of age (40.1 vs. 35.2), smoking history (36% vs. 14%), and marital status (41% vs. 24% married) respectively.

*

Cumulative number up to that time point. There were no Clavien complications higher than a grade 2 in the first year postdonation

β

As reported at that time point on case report forms.

£

See table 1 for specific questions asked for self-reported variables

δ

Missing ≤ 5%

What are the prevalence and specific types of sexual concerns/problems both before and following liver donation?

Figures 2(a)–2(d) show the percentage of responses indicating poorer sexual functioning on each survey item at evaluation, 3 months, and 1 year for male and female donors and non-donors. For all questions, the percentages of responses at each time point are similar for donors and non-donors, as suggested by the overlapping confidence intervals.

Figure 2. Donors and Non-donors Experiencing Poorer Sexual Functioning.

Figure 2

Figure 2

Percentage of subjects showing sexual functioning difficulty, defined as responding half the time or less on desire, erection, and orgasm questions and neutral, dissatisfied, or very dissatisfied on sexual satisfaction question with standard error bars calculated using the normal approximation to the binomial distribution.

Males are less likely to report poorer sexual functioning than females for all questions at all time points except in the area of sexual satisfaction. The percentage feeling poorer sexual desire is higher at 3 months compared to evaluation for both males and females, but drops at 1 year for both. This phenomenon is not as evident for the other three questions.

What variables predict poorer sexual function at evaluation?

Table 4 shows results for the four sexual function questions at evaluation. There were no significant differences between donors and non-donors in any of the four areas of sexual functioning. Females were significantly more likely than males to report problems with sexual desire and difficulty achieving orgasm, while males were more likely to be dissatisfied with their overall sex life. Unmarried respondents had a higher probability of having problems with getting an erection or reaching orgasm, and being dissatisfied with their sex life. Respondents whose intended recipient was their spouse had a significantly higher probability of being dissatisfied with their sex life. Race was only significant in predicting erection in males, with non-whites having greater odds of lower erectile function.

Table 4.

Correlates of Sexual Functioning at Evaluation, 3 Months, and 1 Year Separate Logistic Regression Models for Each Time Point Among Both Donors and Non-Donors at Evaluation, and Only Donors at 3 months and 1 Year Postdonation

Evaluation (n = 256, 122 donors, 134 non-donors) 3 Months Postdonation (n=105 donors) 1 Year Postdonation (n=107 donors)

OR 95% CI P-value OR 95% CI P-value OR 95% CI P-value
Probability of Feeling Sexual Desire Half the Time or Less Donor (Ref = Non-donor) 1.20 (0.71, 2.01) 0.500 - - - - - -
Female (Ref = Male) 3.15 (1.85, 5.35) <0.001 2.95 (1.19, 7.30) 0.019 3.16 (1.24, 8.08) 0.016
Marital status (Ref = Married not Donating to Spouse)
Unmarried 1.02 (0.60, 1.74) 0.932 1.14 (0.45, 2.91) 0.780 1.69 (0.55, 5.24) 0.360
Married Donating to Spouse 2.82 (0.74, 10.72) 0.129 0.68 (0.10, 4.73) 0.696 0.57 (0.05, 6.49) 0.650
Age (Per 10 Years) - - - 1.90 (1.17, 3.09) 0.010 - - -
Compared to before donation, my appearance is worse or much worse versus the same, better or much better¥ - - - 4.14 (1.02, 16.79) 0.047 - - -

Probability of Getting an Erection Half the Time or Less (Males only)* Donor (Ref = Non-donor) 0.70 (0.19, 2.62) 0.599 - - - - - -
Non-white vs. White 8.47 (1.56, 45.94) 0.013 - - - - - -
Unmarried vs. Married** 7.14 (1.66, 30.77) 0.008 0.73 (0.12, 4.58) 0.740 1.67 (0.17, 16.02) 0.658

Probability of Having an Orgasm Half the Time or Less Donor (Ref = Non-donor) 0.86 (0.45, 1.66) 0.654 . . . .
Female (Ref = Male) 10.19 (4.10, 25.36) <0.001 1.69 (0.61, 4.72) 0.314 0.96 (0.37, 2.50) 0.941
Marital status (Ref = Married not Donating to Spouse)
Unmarried 2.21 (1.07, 4.55) 0.032 0.88 (0.31, 2.52) 0.811 1.25 (0.40, 3.86) 0.699
Married Donating to Spouse 2.63 (0.80, 8.67) 0.111 0.38 (0.05, 3.02) 0.359 0.92 (0.08, 10.60) 0.944
Age (Per 10 Years) 1.40 (0.98, 1.99) 0.064 2.45 (1.40, 4.30) 0.002 - - -
Abdominal pain Interferes with my daily lifeδ - - - 3.98 (1.30, 12.16) 0.015 - - -

Probability of being Neutral, Dissatisfied, or Very Dissatisfied with Overall Sex Life Donor (Ref = Non-donor) 0.93 (0.54, 1.61) 0.796 - - - - - -
Female (Ref = Male) 0.34 (0.19, 0.61) <.001 1.41 (0.57, 3.50) 0.458 0.78 (0.33, 1.89) 0.588
Age (Per 10 Years) 1.55 (1.15, 2.10) 0.004 - - - - - -
Marital status (Ref = Married not Donating to Spouse)
Unmarried 2.78 (1.51, 5.12) 0.001 2.09 (0.77, 5.68) 0.150 1.75 (0.58, 5.31) 0.323
Married Donating to Spouse 5.95 (1.59, 22.18) 0.008 6.17 (0.76, 50.33) 0.089 3.84 (0.54, 27.17) 0.178
Current or Previous Smoker (Ref = Never Smoked) - - - 4.42 (1.54, 12.68) 0.006 - - -
Does not Feel Back to Normalα - - - 3.58 (1.43, 8.99) 0.007 2.80 (0.94, 8.37) 0.065
*

N=114 males at Evaluation (48 donors, 66 non-donors), n=47 male donors at 3 months, n=46 male donors at 1 year.

**

Parameter for Married Donating to Spouse could not be estimated because only 1 male donated to their spouse at eval, 3 at 3 months, and 0 at 1 year.

¥

Missing for n=1, excluded from model.

δ

Missing for n=2, excluded from model.

α

Missing for n=5 at 3 months, n=10 at 1 year, excluded from models.

What is the association between poorer sexual functioning postdonation and donation-specific factors?

The fourth and fifth columns in Table 4 show models for the 3 month and 1 year postdonation time points. We examined correlates including recovery time, complications, pain, physical symptoms, view of their physical appearance, and worries about health. At 3 months, concerns about appearance, abdominal pain, and not feeling back to normal were associated with reporting poorer sexual functioning. Donors who felt their appearance was worse or much worse were significantly more likely to report lower sexual desire (OR = 4.14, 95% CI = 1.02–16.79), and donors whose abdominal pain interfered with their daily life were more likely to report difficulty reaching orgasm (OR = 3.98, 95% CI = 1.30–12.16). Donors who did not feel back to normal at 3 months were more likely to report dissatisfaction with their sexual life (OR = 3.58, 95% CI = 1.43–8.99).

At 1 year, no donation-specific variables were significantly associated with sexual functioning, although the effect of not feeling back to normal was attenuated from the effect seen at 3 months (OR=2.80, 95% CI = 0.94–8.37).

What are the probabilities of poorer sexual functioning at the three time points and how do these differ pre- to postdonation?

We tested for differences in the probability of poorer sexual functioning over time, adjusting for gender (Table 5). For all four questions, there were no significant differences between the probabilities of poor sexual functioning at 3 months compared to evaluation. The probability of poor sexual desire decreased at 1 year relative to evaluation (p<0.001) and 3 months (p=0.001). This trend is seen in the other three questions, but does not reach significance. Females have a higher probability of poorer sexual function compared to males, but this difference is only significant in the areas of sexual desire and reaching orgasm (Table 5).

Table 5.

Predicted probabilities of poor sexual functioning by gender and time point*

Time Point Female Mean (SE) Male Mean (SE) P-value Males vs. Females P-value versus Evaluation P-value versus Month 3
Probability of feeling sexual desire half the time or less Evaluation 0.76 (0.06) 0.44 (0.10) 0.003 - -
Month3 0.69 (0.08) 0.35 (0.10) 0.320 -
Year1 0.26 (0.09) 0.08 (0.04) <0.001 .001

Probability of getting an erection half the time or less (Males only) Evaluation - 0.12 (0.06) - - -
Month3 - 0.12 (0.07) 0.943 -
Year1 - 0.07 (0.07) 0.619 0.669

Probability of having an orgasm half the time or less Evaluation 0.40 (0.07) 0.10 (0.05) 0.001 - -
Month3 0.40 (0.08) 0.10 (0.05) 0.984 -
Year1 0.19 (0.08) 0.04 (0.03) 0.063 0.076

Probability of being neutral, dissatisfied, or very dissatisfied with overall sex life Evaluation 0.41 (0.07) 0.40 (0.09) 0.926 - -
Month3 0.44 (0.09) 0.43 (0.10) 0.739 -
Year1 0.29 (0.08) 0.28 (0.10) 0.227 0.169
*

Among the subset of 82 (52 female, 30 male) donors with surveys at evaluation and at least one of 3 months and 1 year.

Does sexual functioning at evaluation predict sexual functioning in the first year postdonation?

Poorer sexual functioning at evaluation was strongly associated with a higher probability of poorer sexual functioning in the first year postdonation in the areas of sexual desire and satisfaction with sex life (OR = 5.69, 95% CI = 1.46–22.21 and OR = 5.12, 95% CI = 1.56–16.77, respectively), adjusting for gender and time.

Sensitivity Analysis

As a sensitivity analysis, participants who reported no sexual activity for the erectile and orgasmic function were excluded from the three sets of models in Table 4 (n=31 non-donors, n=41 donors). The results were largely unchanged, with some previously marginally significant variables becoming non-significant, likely due to the reduction in sample size. More importantly, the magnitude and direction of the effects remained the same. Most respondents who completed surveys at more than one time point did not consistently report having no sexual activity on all of their surveys. Additional testing showed that those included in the longitudinal models did not have significantly different sexual functioning than those who responded at only one time point.

Discussion

Living donors differ from other surgical patients because they undergo their procedure without any expectation of health benefit. While an extensive literature exists on sexual functioning recovery after types of abdominal/genitourinary surgery known to affect sexual functioning (e.g., prostate, urological, hysterectomy, colostomy), this literature is less relevant for living liver donors, who go into the procedure in good health. The present data provide a more comprehensive understanding of the sexual issues of living liver donors than previously available. We asked participants questions on key domains of sexual functioning important to patients. These data can provide a useful basis for developing future psychoeducational interventions to prepare donors for the post-operative recovery period.

Overall, donors were most likely to report poorer sexual functioning at the evaluation phase and at 3 months postdonation, but were least likely to report problems at 1 year. Donors who had poorer sexual functioning at evaluation continued to have poorer function in the early 3 month recovery period but were less likely to have these issues by 1 year. While donors typically report high levels of physical and emotional functioning before donation (in fact, they are selected for these features), that both donors and non-donors report poorer sexual functioning at the evaluation phase demonstrates that some areas of psychosocial functioning are not optimal and might be affected by the stresses inherent in the decision to donate and the evaluation process. Prior studies of donor stress and anxiety show the predonation period to be the most stressful for donors, with a reduction in distress within the early months postdonation (1,3).

Gender differences at evaluation did not persist through postdonation, except that females were consistently more likely to report poorer levels of sexual desire. As there are no inherent differences between males and females on the level of sexual functioning (9,11), this suggests possible issues related to the donation experience are contributing to these results. That both genders experience difficulties at evaluation compared to other time points suggests that this stressful time period affects both genders but perhaps somewhat differently. A prior investigation of gender differences determined that at the predonation phase, women were more likely to be concerned about the donation’s impact on their family and social obligations(24). Although we did not ask about specific stresses reflecting women’s various roles in their families with respect to caregiving responsibilities, such issues may continue postdonation and affect sexual desire.

Those with donation-related complaints (abdominal pain, concerns about appearance, or not feeling back to normal again) reported lower levels in several areas of sexual functioning. Consistent with the existing liver donor literature that shows decrements in physical functioning in the immediate post-operative period (typically the first 3 months) with recovery to baseline levels within 1 year(1), donors may expect that until they are feeling physically better and back to normal aspects of normalcy such as sexual functioning may be decreased. While we hypothesized that donor concerns about their recovery and the impact of donation on their current and future health would be associated with poorer sexual functioning, this was not the case.

Limitations

Missing surveys in the dataset are a limitation, especially the lack of longitudinal data for the non-donors. However we were able to use analytic techniques to make the best use of all available data. We did not have data on donors and non-donors who did not enroll into the A2ALL study. Additionally, the A2ALL cohort had fewer minorities represented compared to all donors during that era which may also have introduced a bias. It is important to note that the baseline sexual functioning of donors before they entered the donation evaluation process is unknown. Donor concerns over the evaluation process, their own future health and well-being, and the health and well-being of the intended recipient may have affected their responses. It is therefore possible that donor baseline sexual functioning was higher than at evaluation which might explain improvement of sexual functioning after 1 year above the scores at evaluation. Although comprehensive sexual functioning instruments exist, in an effort not to overburden respondents, a smaller set of sexual functioning items was chosen. However, the questions asked capture key domains representing sexual functioning. Similarly, data on the specifics of how postdonation factors, such as aspects of physical appearance, may have influenced the donors’ sexual functioning were not obtained. We did not have data on antihypertensive or antidepressant medication usage but these medical issues were uncommon in our cohort and unlikely to affect the findings. It is possible that some participants experienced embarrassment or discomfort when responding to sexual functioning questions, which may have altered their answers or willingness to respond at all. In addition, the questions do not specify whether they refer to sexual functioning with a consistent partner or other patterns of sexual activity. However, these items have been used widely in both interviewer-driven and self-reporting formats.

Conclusions

Sexual function questions are likely not a routine part of donor surgical follow-up. While patients might wish to speak with their physicians/clinicians about their sexual functioning concerns, these conversations are infrequently initiated by the patient and clinicians must be sensitive to the need to ask. Additionally, the focus of a typical postdonation follow-up examination may be on known or expected complications with less consideration of the broader impact of the surgery on a range of functions such as sexual activity. Thus, close monitoring during early recovery with inquiries into sexual functioning issues will provide donors an opportunity to report any problems and allow them to discuss concerns. Awareness that the inherent stresses in the predonation phase may have effects on sexual functioning is important. Educating donors on what to expect with sexual functioning, specifically early in recovery, will probably not lessen these problems but will allow donors to understand and prepare for this phase of their recovery. Donor teams might consider interventions to minimize scarring, prevent hernias, and prepare for postdonation physical appearance to decrease the impact of concerns over appearance on sexual desire. Efforts to educate the donors’ sexual partners may also help to relieve/reduce anxieties and normalize expectations. As we work to maximize the positive psychological and physical experiences associated with living donation, efforts towards reducing stress by educating donors on what is expected and normal and what are anticipated outcomes are the goals of all donor teams. Appreciating that sexual functioning is an essential aspect of donor quality of life directs our focus toward this important area.

Acknowledgments

This study was supported by the National Institute of Diabetes & Digestive & Kidney Diseases through cooperative agreements (grants U01-DK62444, U01-DK62467, U01-DK62483, U01-DK62484, U01-DK62494, U01-DK62496, U01-DK62498, U01-DK62505, U01-DK62531, U01 DK085587, U01-DK85515, and U01-DK62536). Additional support was provided by Health Resources and Services Administration (HRSA), and the American Society of Transplant Surgeons (ASTS).

Abbreviations

A2ALL

Adult to Adult Living Donor Liver Transplantation Cohort Study

BMI

body mass index

CI

Confidence Interval

HRQOL

Health-Related Quality of Life

OR

Odds Ratio

SD

Standard Deviation

SRTR

Scientific Registry of Transplant Recipients

Footnotes

The supplemental data included here have been supplied by Minneapolis Medical Research Foundation (MMRF) as the contractor for the Scientific Registry of Transplant Recipients (SRTR). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy of or interpretation by the SRTR or the U.S. Government.

The SRTR data system includes data on all donor, wait-listed candidates, and transplant recipients in the US, submitted by members of the Organ Procurement and Transplantation Network (OPTN), and has been described elsewhere. The Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services provides oversight to the activities of the OPTN and SRTR contractors.

Conflicts of Interest

The authors have no conflicts of interest to report.

This is publication number 29 of the Adult-to-Adult Living Donor Liver Transplantation Cohort Study.

During the 2004-2010 period the following nine transplant programs and individuals were instrumental in the planning and conduct of this study at each of the participating institutions:
  • Columbia University Medical Center, New York, NY (DK62483): PI: Jean C. Emond, MD; Co-Is: Robert S. Brown, Jr., MD, MPH, James Guarrera, MD, FACS, Martin R. Prince, MD, PhD, Benjamin Samstein, MD, Elizabeth Verna, MD, MS; Study Coordinators: Taruna Chawla, MD, Scott Heese, MPH, Theresa Lukose, PharmD, Rudina Odeh-Ramadan, PharmD, Jonah Zaretsky, BS.
  • Northwestern University, Chicago, IL (DK62467): PI: Michael M.I. Abecassis, MD, MBA; Co-Is: Talia Baker, MD, Laura M. Kulik, MD, Daniela P. Ladner, MD; Study Coordinator: Patrice Al-Saden, RN, CCRC.
  • University of California Los Angeles, Los Angeles, CA (DK62496): PI: Johnny C. Hong, MD; Co-I: Ronald W. Busuttil, MD, PhD; Study Coordinator: Janet Mooney, RN, BSN.
  • University of California San Francisco, San Francisco, CA (DK62444): PI: Chris E. Freise, MD, FACS; Co-I: Norah A. Terrault, MD, MPH; Study Coordinator: Dulce MacLeod, RN.
  • University of Colorado, Aurora, CO (DK62536): PI: James R. Burton, Jr., MD; Co-Is: Gregory T. Everson, MD, FACP, Igal Kam, MD, James Trotter, MD; Study Coordinators: Carlos Garcia, RN, BS, Anastasia Krajec, RN.
  • University of Michigan Health System, Ann Arbor, MI (DK62498): PI: Robert M. Merion, MD, FACS; DCC Staff: Mary Akagi, MS, CCRP, Douglas R. Armstrong, BSN, MS, Abby Brithinee, BA, Margaret Hill-Callahan, BS, LSW, Lisa Holloway, BS, CCRC, Terese A. Howell, BS, CCRC, Brenda W. Gillespie, PhD, Beth Golden, BScN, Anna S.F. Lok, MD, Monique Lowe, MSI, Akinlolu O. Ojo, MD, PhD, Samia Shaw, AAIT, Abigail Smith, MS, Robert A. Wolfe, PhD.
  • University of North Carolina, Chapel Hill, NC (DK62505): PI: Paul H. Hayashi, MD, MPH; Study Coordinator: Tracy Russell, MA.
  • University of Pennsylvania, Philadelphia, PA (DK62494): PI: Abraham Shaked, MD, PhD; Co-Is: Kim M. Olthoff, MD, FACS, K. Rajender Reddy, MD, Mark A. Rosen, MD, PhD; Study Coordinators: Brian Conboy, PA, MBA, Mary Kaminski, PA-C, Debra McCorriston, RN, Mary Shaw, RN, BBA.
  • University of Virginia, Charlottesville, VA (DK62484): PI: Carl L. Berg, MD; Co-I: Timothy L. Pruett, MD; Study Coordinator: Jaye Davis, RN.
  • Virginia Commonwealth University - Medical College of Virginia, Richmond, VA (DK62531): PI: Robert A. Fisher, MD, FACS; Co-Is: Martha K. Behnke, PhD, Adrian Cotterell, MD, FACS, Ann Fulcher, MD, Pamela M. Kimball, PhD, HCLD, Mary E. Olbrisch, PhD, ABPP, Marc P. Posner, MD, FACS, Mark A. Reimers, PhD, Amit Sharma, MD, R. Todd Stravitz, MD, FACP; Study Coordinators: April Ashworth, RN, BSN, Joanne Davis, RN, Sarah Hubbard, Andrea Lassiter, BS, Luke Wolfe, MS.
  • National Institute of Diabetes and Digestive and Kidney Diseases, Division of Digestive Diseases and Nutrition, Bethesda, MD: Edward Doo, MD, James E. Everhart, MD, MPH, Jay H. Hoofnagle, MD, Stephen James, MD, Patricia R. Robuck, PhD, Leonard B. Seeff, MD, Rebecca J. Torrance, RN, MS.

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