A peer-based intervention to educate liver transplant candidates about living donor liver transplantation

Abstract

The number of liver donors has not measurably increased since 2004 and has begun to decrease. Although many waitlisted patients may be suitable candidates to receive a living donor graft, they are often reticent to discuss living donation with close friends and family, partly because of a lack of knowledge about donor health and quality of life outcomes after donation. The objective of this study was to test the effectiveness of an educational intervention that uses testimonials and self-report data from living donors in New York State. The study had an independent sample pretest (n = 437) and posttest (n = 338) design with posttest, between-subjects comparison for intervention exposure. All waitlisted patients at 5 liver transplant centers in New York were provided a peer-based educational brochure and DVD either by mail or at the clinic. The outcome measures were liver candidates' knowledge and self-efficacy to discuss living donation with family and friends. The number and proportion of individuals who presented to centers for living liver donation evaluation were also measured. Liver transplant candidates' self-efficacy to discuss living donation and their knowledge increased from the pretest period to the posttest period. Those exposed to the peer-based intervention reported significantly greater knowledge, a greater likelihood of discussing donation, and increased self-efficacy in comparison with those not exposed to the intervention. The results did not differ by age, length of time on the waiting list, education, or ethnicity. In comparison with the preintervention period, living donation increased 42%, and the number of individuals who presented for donation evaluation increased by 74%. Liver Transpl 16:42–48, 2010. © 2009 AASLD.

The need for organ donors in the United States is unprecedented, with 100,539 candidates on the waiting list as of January 30, 2009.1 Included on this burgeoning list are over 15,000 individuals who are in need of a liver transplant. Unfortunately for those in need of a liver, the number of deceased donors has not recently seen significant increases; in fact, the number of donors decreased from 6650 in 2006 to 6494 in 2007.1 Data from 2005 and 20062 indicated median wait times for a liver of 296 and 306 days, respectively. There were 133 deaths on the liver waitlist in New York State in 2008; this was an increase of 16% over 2007. The critical shortage of deceased liver donors, increased wait times, and deaths on the waitlist all incentivize transplant programs to look for alternative ways to expand the pool of livers available for transplantation.

A major advancement in the attempt to narrow the divide between organ demand and supply is adult-to adult living donor liver transplantation (LDLT). LDLT was introduced in 1989 to address the critical shortage of livers available to pediatric patients.3 The general public has become more accepting of LDLT,4 and the principles of LDLT5 hold that LDLT should be performed when the risk to the donor is justified by the expectation of an acceptable recipient outcome (ie, an outcome comparable to that with a deceased donor graft).

Although patient and graft survival with LDLT is equivalent to that with deceased donor transplantation,2, 6 there are many advantages to LDLT,7 including optimal timing for transplantation, graft quality, and a short ischemic time. The evaluation process for potential donors is thorough, and as few as 17% of volunteers who begin the process become eligible for donation.8–11 Recent data4 indicate an interesting pattern with respect to donor evaluations. Over a 22-month period, 231 potential living donors presented for evaluation (there were 251 patients on the transplant waiting list); however, 41% of the patients failed to have 1 donor, and 15% of the patients had 58% of the potential donors. Thus, the modal number of donors who present for evaluation for living donation is zero. Waitlisted candidates' concerns over ethical issues and donor safety,12 coupled with their general lack of knowledge about organ donation,13, 14 create reluctance on the part of candidates to discuss LDLT with family and friends.

It is proposed that liver transplant candidates' self-efficacy to discuss liver donation in general and living donation in particular should be targeted in an effort to increase discussion about LDLT. Self-efficacy is conceptualized as the candidates' appraisal of their own knowledge or ability to discuss donation and the perceived value of such a discussion.14–16

Prior to this intervention, waiting liver candidates were first introduced to living liver donation as 1 of 3 transplant options: (1) transplantation with a deceased donor liver, (2) transplantation with an extended criteria donor liver (ie, less ideal than a standard donor liver), and (3) transplantation with a living donation. A brief, written definition of the options was presented and discussed as part of the initial evaluation for placement on the liver transplant list. Very little information was provided about the potential impact of donation on the donor's quality of life, and the scant information was not referenced to a former living donor. Few transplant candidates asked questions about living donation at that point, nor did many report discussing the option with family or friends. Many transplant programs also have a patient education class focused on transplant evaluation, surgery, and immunosuppressive and follow-up requirements. In this class, the option of living donation may be presented a second time. However, it is important to note that none of the information is presented from a donor's perspective, and fewer than 15% of waiting candidates ever identify a potential donor.

This article presents the results of an educational intervention designed to educate waiting patients and potential living liver donors with peer-driven postdonation quality of life information; this population has lacked information from this perspective in the past. The educational intervention is unique to the transplant literature and, for the educational content, relies on the testimony of former living liver donors from self-reports given in response to surveys conducted in 2004–2005.

LDLT, living donor liver transplantation.

PATIENTS AND METHODS

Peer-Based Educational Intervention

An attempt is periodically made to survey all living liver donors in New York State and ask questions about individuals' health and quality of life post-donation. The intervention materials reported herein were derived from 44 survey respondents in 2004–2005. The contents of the booklet and DVD are centered on 5 domain areas from donor responses: (1) surgery, (2) recovery after donation, (3) costs of donation, (4) employment issues, and (5) life after donation. Table 1 outlines the factors covered in the educational intervention. The intervention video may be directly accessed via the Web at http:/www.nyclt.org/living_donor/. The intervention is available in 6 languages (English, Spanish, Chinese, Russian, Korean, and Arabic). In addition to information from former donors, direct quotes from donors who were asked what information they would give individuals considering the option of living liver donation were provided in the educational materials.

Table 1. Overview of the Interventional Content

Domain Area	Factors
Surgery	• Satisfaction with hospital care
	• Satisfaction with treatment staff
	• How donors felt after donation
Recovery	• Medical problems following surgery
	• Depression/anxiety
	• Family support
	• Current medical problems
Costs	• Medical expenses
	• Estimated total costs
	• Insurance
Employment	• Length of time to return to work
	• Employment status at time of surgery
	• Household income
Life after donation	• Would they do it again?

Participants and Setting of Intervention

At the time of this study, New York State had 5 liver transplant centers, 4 of which are located in the New York metropolitan area. The centers include the Recanati/Miller Transplantation Institute at the Mount Sinai School of Medicine, the Center for Liver Disease and Transplantation at Columbia University Medical Center, the Mary Lea Johnson Richards Transplant Center at the New York University Hospitals Center, the transplant center at the Westchester Medical Center, and the transplant program at the University of Rochester/Strong Memorial Hospital. The intervention was approved by the institutional review board at each center and at the University at Buffalo. Transplant programs vary in size, with the number of waitlisted candidates ranging from 273 to 574; New York currently has 1947 individuals on the liver waiting list according to the United Network for Organ Sharing (12% of candidates nationally).

Procedures

A random sample of waitlisted candidates were selected to voluntarily complete surveys in the winter and spring of 2006 and 2007 (ie, the preintervention sample) while attending clinic visits at each of the 5 centers. Transplant staff asked candidates to complete surveys, and anonymous surveys were deposited in an envelope at each transplant center. Staff members at each of the centers were available to respond to any questions candidates might have about the survey questions or items. A second sample of waitlisted candidates in the spring and fall of 2008 (ie, the postintervention sample) were approached with consecutive sampling to complete surveys at each of the centers. The second sample after the test was approached after the intervention was introduced.

Surveys were purposely short (1 double-sided page) and written at an eighth-grade level of readability to increase candidate understanding and participation. Subjects were asked several descriptive/demographic questions, including questions about (1) the length of time on the waiting list, (2) their education level, (3) their ethnicity, (4) their age, (5) the receipt of educational materials (and the helpfulness of the materials), (6) the discussion of living liver donation with loved ones and any plans for such discussion, and (7) other places where they may have learned about liver transplantation.

An attempt was made to expose all waitlisted candidates to the intervention by 1 of 2 methods. First, candidates were given an intervention brochure and DVD when presenting at the individual transplant center during clinic visits in 2007–2008. Second, in an attempt to reach as many candidates as possible, every individual on the waiting list at each program was mailed a copy of the booklet, the DVD, and information about the Web site.

Transplant programs in New York State have been required since 2004 to track the number of individuals who are interested in being evaluated to donate a liver segment to a waitlisted patient. An individual is determined to be interested in living donation when the individual self-initiates contact with the transplant program with a request to be evaluated for living liver donation. Differences in the number of requests for evaluation were measured before and after the intervention.

Measures

The 7 questions designed to measure waitlisted candidates' self-efficacy for discussion of living liver donation showed acceptable internal consistency (Cronbach's α = 0.77). Four of the knowledge questions used 4-response options, and the remaining 3 questions used 5-point Likert scales of agreement; thus, all values were normalized with z values before analyses. Cohen and Cohen17 recommended that values be normalized before parametric statistics are determined. The 7 self-efficacy questions were as follows:

• 1
  How much do you know about the liver transplantation process [nothing/very little/fair amount/a lot]?
• 2
  Have you ever talked about living donation with family or friends [never/once/a few times/many times]?
• 3
  Do you have plans to talk about living donation with family or friends [no/maybe/probably/definitely]?
• 4
  How much do you know about living donation? [nothing/very little/fair amount/a lot]?

The last 3 items were rated on a 5-point Likert scale, with 1 representing “strongly disagree” and 5 representing “strongly agree”:

• 5
  I am comfortable discussing the option of living donation with close friends and family.
• 6
  I know enough about living donation to discuss it with close friends and family.
• 7
  Living donation has been shown to be a relatively effective and safe treatment plan.

To compare pretest and posttest periods and intervention exposure (ie, exposure versus no exposure), means from self-efficacy, independent t tests were used to test for statistical significance with α set at 0.05. Chi-square tests were employed to compare proportional differences in nominal-level measures (eg, the length of time on the waiting list).

The number of individuals interested in living liver donor evaluations per year was used as the main outcome factor for intervention effectiveness. Donor evaluation was defined at the outset of the study as the evaluation of any individual who indicated an interest in being evaluated for LDLT that resulted in a rule-out or acceptance for donation. Evaluation results were gathered from each of the 5 centers before and after the intervention. Donor consent was also evaluated, and for reporting purposes, an individual was considered a donor if he or she had donated a liver graft in that year.

RESULTS

Descriptives of the Participants

Four hundred thirty-seven waitlisted candidates (n = 437) completed surveys before the intervention, and 338 completed surveys after the intervention. Survey participation was somewhat equal across the 5 liver transplant centers, with participation before and after the test ranging from 141 (center 2) to 182 respondents (center 4). Table 2 reports the number of survey respondents by center over time. Participants' ethnicity, sex, and education levels did not differ between the pretest and posttest periods; all percentages are reported in Table 2. Most were male (63%) and had a high school (33%) or college education (33%), and 56% of the total sample were non-Hispanic white. The mean and median age was 55 years, and 66% of the respondents were between 45 and 65 years of age. Most surveyed were either newly listed (26%) or had been on the list for greater than 1 year (50%).

Table 2. Descriptive Statistics

		Pre-Test	Post-Test	Total
Female (%)		37	38
Education level (%)	Did not complete high school	18	16
	High school	33	41
	College	39	34
	Graduate school	10	9
Ethnicity (%)	African American	7	9
	Hispanic	23	25
	White (non-Hispanic)	63	58
	Asian	6	5
	Other (race or ethnicity)	2	2
Number of participants by transplant center	Center 1	94	51	145
	Center 2	88	53	141
	Center 3	56	87	143
	Center 4	113	69	182
	Center 5	86	78	164
	Total	437	338	775
Length of time on the waiting list	New patient	127 (30%)	72 (22%)	199
	Less than 6 months	39 (9%)	35 (11%)	74
	6 months to 1 year	55 (13%)	46 (14%)	101
	Greater than 1 year	202 (48%)	177 (54%)	379
	Total	423	330	753

Survey respondents who self-reported (68%) about the helpfulness of the transplant center's routine materials provided the following ratings: 12% reported the materials to be “not at all helpful,” 26% reported the materials to be “somewhat helpful,” 39% reported the materials to be “helpful,” and 23% reported the materials to be “very helpful.” When they were asked where else they had learned about living donation, the responses were as follows: doctor (40%), coordinator (39%), the Internet (34%), newspapers (21%), magazines (20%), television (16%), friends (13%), and family (12%).

Self-Efficacy and Knowledge

Before the self-efficacy scale was examined, 2 critical items were examined to verify if waitlisted candidates' self-reported knowledge about donation differed by intervention exposure. Candidates after the intervention were asked the following: “How much do you know about the liver transplant process?” Responses were compared after the intervention, and statistically significant differences were found for candidates who reported exposure: candidates exposed to the intervention reported more knowledge about living donation than candidates who were not exposed. Specifically, of those exposed, 91% reported either a “fair amount” or “a lot” of knowledge versus 70% for the unexposed group [χ²(3) = 19.71, P < 0.01]. Similar findings were found for this question: “How much do you know about living donation?” Eighty-one percent (versus 50% of those with no exposure) reported a “fair amount” or “a lot” of knowledge [χ²(3) = 31.38, P < 0.01]. Figures 1 and 2 compare percentages by response for exposure and no-exposure groups.

Figure 1. Liver transplant candidates' knowledge about liver transplantation with intervention exposure: living donation.

Figure 2. Liver transplant candidates' knowledge about liver transplantation with intervention exposure: the liver transplant process.

The length of time on the waiting list was not a covariate or predictor of knowledge or self-efficacy for candidates either before or after the intervention. All comparisons between the length of time on the waiting list and the 2 dependent factors were not statistically significant.

There are 7 items that compose the self-efficacy measure, and if a respondent failed to complete any or several items, a conservative decision was made not to replace them with mean values. Before the test, 82% completed self-efficacy measures, and after the test, 86% completed them (see Fig. 3 for the completion rates for the surveys). The mean z values of self-efficacy were compared before and after the test and by exposure after the test. In comparison with the pretest period, candidates reported greater self-efficacy toward living donation, and this difference was statistically significant [t(609) = −2.42, P < 0.02, r = 0.24]. For candidates who completed self-efficacy measures after the test, there was a statistically significant difference for exposure to educational intervention. Specifically, the sample of individuals who viewed the intervention (n = 77, 32%) reported higher self-efficacy than those who did not view the intervention [n = 165, 68%), t(240) = 5.02, P < 0.01, r = 32].

Figure 3. Flow chart of completed responses for pretest and posttest measures.

Number of Individuals Evaluated for Donation

In addition to measuring changes in waitlisted candidates' self-efficacy and knowledge, this study tracked the number of friends and family members who presented to the 5 transplant centers for further information, discussion, and, if appropriate, a comprehensive evaluation. Data in Fig. 4 illustrate a 74% overall increase in LDLT evaluations from 2006 to 2008 in the intervention sites; 1 center temporarily suspended its living donor program during the post-intervention phase because of the lack of a surgeon. The number of individuals who completed the evaluation and donated a liver graft increased by 42% post-intervention.

Figure 4. Living liver donors and evaluations.

In addition to the number of evaluations for donation by liver center, candidates were asked the following: “Have you ever talked about living donation with family or friends?” Seventy-eight percent of intervention subjects reported either “few times” or “many times” versus 61% of subjects who were not exposed to the intervention. This difference in proportions was statistically significant [χ²(3) = 20.62, P < 0.001].

DISCUSSION

Living donation has the potential to narrow the gap between the critical shortage of available organs and the growing number of people in need of a liver transplant. Although the outcomes of living liver donation for recipients are fairly well documented, reports about outcomes, both medical and nonmedical, for living liver donors can best be characterized as shards of studies over the past few years.

In February 2004, new requirements for living liver donation were adopted in New York (New York Codes, Rules, and Regulations section 405.22), by which the New York State Department of Health requires liver transplant programs to track living liver donors for life and report donor characteristics, outcomes, and follow-up data related to long-term health and quality of life. Also unique to New York is the existence of a statewide nonprofit organization comprising all New York State liver transplant programs, which has created a forum for collaboration, peer review, and data sharing. As a result of this unique environment, the liver transplant programs are able to pool self-reported quality of life data gathered from living liver donors across the liver transplant programs and develop educational materials to share with waitlisted liver candidates and their friends and family.

If a waitlisted candidate appraises a situation (eg, discussing living donation at a diner with a close friend) as requiring more skills or knowledge (eg, knowledge about the impact of living donation on said friend) than he has, then the individual will be reluctant to act and may avoid such situations in the future. By contrast, those awaiting living liver donation who experience strengthened self-efficacy not only will be more active and less intimidated about discussing living donation but also may be more proactive and initiate such discussions.

In this case, the multifaceted, peer-based intervention was designed to educate and increase the self-efficacy of candidates on the liver waiting list. Increased knowledge and efficacy realized through the project intervention moderated the relationship between the educational activities and the number of individuals who presented for evaluation for living liver donation. The data are compelling: reported gains in waitlist candidates' knowledge and self-efficacy with respect to LDLT appear to be associated with significant increases in the number of individuals interested in the option of LDLT and with positive impacts on actual donation rates (ie, there was an increase not only in those who were evaluated but also in those who ultimately became donors.)

Of course, the study is limited in that the data set is relatively small, and the pretest/posttest design carries the typical constraints. The preintervention and postintervention surveys were completed by different cohorts of patients, and therefore it is possible that these results were due to sampling differences before and after the intervention. The relatively low exposure rate in the postintervention cohort may have been due to the patient population being ill, the mail being overlooked, or poor memory recall. It is difficult to say why these respondents reported not being exposed, as every attempt was made to expose them. The survey results show whether or not candidates remembered being exposed but not where they were exposed (ie, by mail or in the clinic), and the site of exposure may have an impact on self-efficacy.

One cannot attribute all the findings to the educational interventions, particularly because, although the gains in evaluated and total living liver donors were relatively dramatic, the gains in understanding LDLT were modest. Other factors may have played a role, such as changes in practice patterns, the waitlist activity, the availability of deceased donor organs, and the staffing and patient population. The increase in the number of potential donors who self-initiated discussions with the transplant program about LDLT, however, was likely less affected by center-based factors and may be better explained by an increase in the knowledge and self-efficacy of individuals with respect to donation.

Although the study population was diverse and encompassed candidates from 5 transplant centers, the study was done in a single state with a unique regulatory environment that mandates the requirements for the living liver donation process. It will be important to test the effects of the peer-developed educational intervention in a setting in which regulatory variables play a smaller role.

The need to educate waitlist candidates and salient others about the impact of living liver donation is well-established. The importance of a peer perspective is less documented. The majority (87%) of donors whose self-reports were used to create the educational materials used in this intervention reported that if they were to do it again, they would seek a former donor's input prior to donating. One anonymous donor gave this advice to individuals considering the option of LDLT: “Every decision is personal … get as much information as possible and speak to other donors.”

Further study is needed to determine if educational materials created from the self-reports of previous donors, such as the materials used in this study, “In Their Own Words—The Experiences of Living Liver Donors,” are more likely to increase candidates' self-efficacy with respect to LDLT than standard education provided by the transplant program.

Acknowledgements

The authors thank Joan Kruegler, Samantha D'Angelo, Maureen Burke-Davis, Cecilia David, Jackie Rosario, and Mary Vetter for their important contributions to this project.