For patients with end-stage renal disease (ESRD), a. Improving the delivery of patient education about kidney transplant in a transplant center

Improving the delivery of patient education about kidney transplant in a transplant center Context Kidney transplant is usually the best treatment option for patients with end-stage renal disease; however, transplant rates remain low in the United States. More research is needed about patients educational needs to ensure that patients are making informed decisions about their treatment options. Objective To examine patients perceptions of the delivery and format of a kidney transplant education program in a clinical setting, specifically to (1) identify useful aspects of the transplant education process, (2) discuss aspects of the program delivery that need improvement, and (3) provide recommendations to enhance the education delivery and format surrounding kidney transplant. Design A descriptive study using focus group meetings with patients at different stages of the transplantation process (in evaluation, listed, and transplant recipients). Data were analyzed by using thematic content analysis. Results Use of printed materials and handouts, group education format, and patient advocate component as well as bringing a companion were all effective aspects of the education program. Concerns about the education program stemmed from its complexity, technicality, and length. Participants recommended that patients be sent a formal invitation letter, with a detailed agenda and a video on kidney transplant, and that patients be encouraged to bring a companion to the education program. Responses specific to the stage of the transplant process are presented. Conclusion Concentrated attention to the delivery and content of the transplant education programs may significantly assist with patients outcomes throughout the transplant process. (Progress in Transplantation. 2012;22:403-412) 2012 NATCO, The Organization for Transplant Professionals doi: http://dx.doi.org/10.7182/pit2012716 Rula Wilson, DNSc, RN, Diane R. Brown, PhD, Makini A. S. Boothe, MPH, Francis L. Weng, MD, MSCE University of Medicine and Dentistry of New Jersey, Newark (RW, DRB, MASB), Saint Barnabas Medical Center, Livingston, New Jersey (FLW) Corresponding author: Rula Wilson, DNSc, RN, University of Medicine and Dentistry of New Jersey, School of Nursing, 65 Bergen St, #1017, Newark, NJ 07065 (e-mail: btoushrm@umdnj.edu) To purchase electronic or print reprints, contact: The InnoVision Group 101 Columbia, Aliso Viejo, CA 92656 Phone (800) 899-1712 (ext 532) or (949) 448-7370 (ext 532) Fax (949) 362-2049 E-mail reprints@aacn.org For patients with end-stage renal disease (ESRD), a kidney transplant is usually the best treatment option. 1-3 According to the Organ Procurement and Transplantation Network, more than 33 000 patients were registered on the transplant waiting list in the United States in 2008, yet only 16067 patients received a kidney transplant, of which 63% were deceased donor kidney transplants (DDKT) and 37% were living donor kidney transplants (LDKT). 4 Adequate transplant education is pivotal to ensure that patients are making informed decisions about their treatment options. 5 Such education improves knowledge among patients and their families and could potentially increase transplantation rates 5,6 thus decreasing renal health disparities 7 and enhancing overall quality of life for patients with ESRD. 8-10 Education should include information about different transplant options, the surgical process, and the medical risks involved with transplant in order to increase the likelihood of pursuing the best treatment option. 11-13 Transplant centers are the most common source of transplant information. 5,14 The National Kidney Foundation describes transplant centers as the greatest reservoir of knowledge regarding state-of-the-art practices and asserts that transplant centers must assume greater responsibility for education and training. 1 The Centers for Medicare and Medicaid Services have published rules and regulations for approval of organ transplant centers, 15 which are supported by the North American Transplant Coordinators Organization. 16 Within these guidelines, transplant centers are required to inform patients about treatment alternatives, evaluation process, surgical procedure, the right to refuse transplant, potential medical or psychosocial risks, donor-specific factors that could affect the transplant outcomes, and national and centerspecific outcomes (eg, patient and graft survival rates). Studies have examined the delivery of education programs in clinical settings to improve patients overall Progress in Transplantation, Vol 22, No. 4, December 2012 403

Wilson et al Table 1 Demographic characteristics of the study participants No. (%) of participants Characteristic Age range, y 30-39 40-49 >50 Sex Male Female Race/ethnicity Asian African American Hispanic/Latino White Marital status Never married Married/partnered Divorced Widowed Education High school graduate or equivalent Some college Bachelor s degree Post-Bachelor education Transplant recipient (n = 7) 7 (100) 4 (57) 3 (43) 6 (86) 6 (86) 2 (29) 3 (43) Listed (n = 7) 2 (29) 4 (57) 4 (57) 3 (43) 5 (71) 5 (71) 2 (33) a 2 (50) a 1 (17) a a In evaluation (n = 5) 4 (60) 3 (60) 2 (20) 2 (40) 2 (40) 3 (60) 3 (60) Total (N = 19) 1 (5) 3 (16) 15 (79) 11 (58) 8 (42) 1 (5) 4 (21) 2 (11) 12 (63) 2 (11) 14 (74) 2 (11) 1 (5) 4 (22) b 9 (50) b 3 (17) b 2 (11) b a One observation was missing for the Listed group; the denominator is 6. b One observation was missing from the total; the denominator is 18. education about kidney transplant. 14 In most transplant centers, education is delivered through various formal education techniques during the transplant evaluation process such as written or print materials, 11,14,17,18 oneon-one education, 14 group lecture, 14 slide presentation, 14 and video. 14,18 Studies have identified key components of transplant education such as the use of educational materials for family and friends unable to attend sessions, 19 printed information about how to talk about living donation, 5 use of Internet-based materials from credible websites, 20 and role-playing exercises on asking potential living donors to donate. 5,18,21 Strategies may also involve members of a patients social network at all sessions, 20,22 as well as posing open-ended questions 22 or using the teach-back technique to assess patients recall and comprehension. 20,22 These studies suggest that educators use a variety of delivery methods for transplant education. Programs must also address barriers to transplantation such as financial concerns 1 and lack of accurate information about transplantation. 1 Specifically for LKDT candidates, effective content include increasing knowledge about the risks to the donor, 5,23-25 how or why to begin the LKDT process, 25 and skillbuilding strategies related to approaching others about kidney donation or initiating the conversation. 5,23-25 Although researchers have been working to learn more about effective education of patients through examination of program delivery, content, and educational strategies, studies have not examined patients education needs at different stages of the transplant process. Given this gap in research, the purpose of this study is to examine patients perceptions of the delivery and format of a kidney transplant education program in a clinical setting at various stages of transplant. The study objectives are to (1) identify useful aspects of the transplant education process, (2) discuss aspects of the educational program delivery that need improvement, and (3) provide recommendations to enhance the education delivery and format surrounding kidney transplant. Methods This descriptive study uses focus groups to assess patients educational needs with regard to kidney transplant. Study participants were recruited from Saint Barnabas Medical Center (Livingston, New Jersey), an active kidney transplant center with more than 1000 persons on its waiting list and performing about 200 transplants annually. Participants were recruited by the study s research associate and were invited to participate in focus groups to discuss their experience with the educational component of their transplant evaluation. As shown in Table 1, patients were invited to participate in 1 of the following 3 focus groups: (1) Transplant recipients: patients who have received an 404 Progress in Transplantation, Vol 22, No. 4, December 2012

Improving the delivery of patient education about kidney transplant Table 2 Summary of useful aspects of the transplant education process (all groups) Satisfied with the education program (excellent, informative, etc). Staff members were approachable and willing to answer questions. Printed materials/handouts were useful to refer to afterwards and to clarify content they missed or did not understand. The group format allowed participants to learn from others questions. Easy to call the transplant staff (eg, nurses, dieticians, social workers, case managers) if they missed or did not understand any of the content. The patient advocate component was useful, informative, and inspirational. Most remembered that kidney transplant options were discussed in the program as well as the pros and cons for living donor and deceased donor kidney transplant and the benefits of living donor over deceased donor transplants. Bringing a companion to the education program provided moral support and assistance in remembering important information, asking questions, keeping things filed and organized, and keeping the patient on track with medications, diet, follow-up visits, etc. LDKT, (2) Listed: patients who are on the waiting list for DDKT, and (3) In evaluation: patients who are in the evaluation stage and waiting to be listed. The transplant evaluation process includes a 90- to 120-minute formal educational component. Potential candidates, along with interested family and friends, attend the formal education program at the transplant center. The education program consists of a presentation on kidney transplant, including the evaluation process, DDKT, LDKT, paired exchange programs, the transplant surgery, and long-term care after transplant. The presentation also includes a short meeting with a volunteer patient advocate, a recipient of a kidney transplant who describes his or her personal experience with kidney transplant. After the presentation, patients have individual meetings with each member of the transplant team (nurse coordinator, transplant nephrologist, social worker, and dietician), during which patients are usually asked about any potential living donors. After the initial evaluation day, potential candidates must complete further tests and evaluations to assess their suitability for transplant. Potential candidates who are deemed suitable for transplant are listed for DDKT. Listed candidates can receive LDKTs if they have willing and suitable donors. The focus groups in this study included 19 participants, 5 to 7 participants in each group. Consent was obtained in accordance with the institutional review boards of the involved institutions. Before the start of the focus group, participants were asked to complete a background questionnaire on demographic characteristics. Participants received refreshments and a $20 gift card to a local grocery store as an incentive. The focus group discussions were audio taped and then transcribed verbatim. Data analysis consisted of a thematic content and standard focus group analysis techniques. 26 We derived study themes and concepts by reviewing the transcripts multiple times and comparing meeting notes. Through the process of coding, significant statements and concepts were identified and grouped together to form themes. A coding scheme was used to identify similarities in responses, conduct group comparisons, and provide quotes supporting the identified concepts and themes. Two authors independently reviewed the transcripts and meeting notes and identified common themes of the participants experiences with the education program. Then, they compared their findings and developed a narrative of the themes including verbatim phrases. Study results were reviewed with the remaining coauthors, as well as a clinical nurse specialist in the area of kidney transplant. Results As shown in Table 1, most participants were males (58%) and more than 50 years of age (79%). Although almost two-thirds of the participants were white (63%), the study also included African American (21%), Hispanic (11%), and Asian (5%) participants. Most of the participants were married or partnered (74%) and had some college education or higher (78%). Useful Aspects of the Transplant Education Process Useful aspects of the transplant education process are summarized in Table 2. Overall, across all the focus groups, the participants were satisfied with the education program they received about kidney transplant. Most of the participants stated that the education program was excellent and informative and that the program staff thoroughly explained everything ( I felt it was a very, very informative day, and I think they ran it very well. There was no lapse in between, and they addressed all the issues. Transplant recipient). They thought that the staff was approachable and were willing to answer their questions ( All my questions were answered and I got a wealth of information from the session. I really did. Listed participant). Participants stated that the printed materials and handouts that they received during the education program Progress in Transplantation, Vol 22, No. 4, December 2012 405

Wilson et al were useful to refer to afterwards. A listed participant explained I still look at some of the material I received every day. I still go over some of that. The materials helped clarify content they missed or did not understand. An in-evaluation participant stated Oh, yes [the materials were very helpful]... Everything I needed to know was in the papers. In addition, participants thought the group format of the education program was useful and that they learned from each other s questions. For example, an in-evaluation participant stated I thought the group was good because there were other people that may ask questions that maybe you wouldn t have asked. They also thought that it would be easy to call the transplant center afterwards with additional questions if they missed or did not understand any of the content of the education program. Several participants indicated calling the transplant staff (eg, nurses, dieticians, social workers) and having their questions answered and/or needs addressed. For example, a transplant recipient stated If you called with a question and they were unable to answer it at that time, you always got a call back and a quick call back. Also, a listed participant stated I did call individual people and speak with them so that to clarify things... It was very helpful. Whenever you felt that was overloading you during the education program, you still get clarification. Participants across groups also described the patient advocate component of the education program as useful, informative, and inspirational ( I like the fact that they brought somebody there who went through transplant... That I like, because you can actually ask some questions and stuff... from experiences. Listed participant). They thought that the patient advocate explained the mindset and emotions of going through kidney transplant. Participants also thought that they could relate to the experience of the patient advocate as a person who had been through similar experiences. For example, an in-evaluation participant stated: She explained about your mindset and your emotions going through kidney transplant. And she explained everything she went through, and we was just sitting there with our mouths open... It was a life-changing experience for her because the donor that came forth to donate a kidney was a close friend of hers and she never expected... It was the best part for me. A few participants stayed in contact with the patient advocate for a period after the program ( She was in contact with me and my family a lot... She was very responsive. Transplant recipient). Most participants remembered that different kidney transplant options were discussed in the program. They also remembered that the pros and cons for LDKT and DDKT were explained. They thought that the program increased their knowledge about LDKT as well as its benefits over DDKT. A transplant recipient stated I remember they said that a living donor is better than a cadaver. A listed participant stated I did understand the process and the pros and cons, like you said. It was pretty clear to me as well. Most of the participants thought that bringing a companion with them to the education program was helpful. Most participants (84%) brought someone with them, mainly their spouse. All transplant recipients and all listed participants but 1 brought someone; 3 out of 5 in-evaluation participants brought someone. The companion s presence provided moral support and assisted in remembering important information, asking questions, helping the patient keep things filed and organized, and keeping the patient on track with medications, diet, follow-up visits, and so on. I brought my wife... It helped. It did, because she would lean over and say what about this? Something I wouldn t have thought of. And she has everything in a file folder at home. Oh, does she organize it... But, you know, she references it all the time. When I m trying to con her into eating something she ll say this is on the no list... She said she was glad we came. Listed participant I brought my wife. Well, [it was helpful] as far as the moral support. You know, she asked a few questions herself... just having her there with me made me feel a little better. She took notes and things. Listed participant [My husband] learned a lot... he didn t know what you really had to go through in order to get a kidney, all the tests that are required. And that was something to him... He thought you could just sign the piece of paper that day and get on the list. In-evaluation participant Companions also appeared to enjoy the education program and having been part of the process contributed to decision making. For example a listed participant stated [My wife] enjoyed the presentation. She thought it was very well put together, overall. For transplant recipients, having a companion seemed to be particularly beneficial because their presence contributed to the decision-making process about transplant options. A transplant recipient stated That s what made my daughter decide that day, come hell or high water, she was going to be the donor. It was helpful. Another transplant recipient stated My wife was with me, and then she turned out to be the living donor. So her education was far more important than mine. 406 Progress in Transplantation, Vol 22, No. 4, December 2012

Improving the delivery of patient education about kidney transplant Table 3 Summary of aspects of the education program delivery that need improvement All groups Most did not remember the content of the presentation, except after the focus group facilitator listed the content of the presentation slides. Most described the program as overwhelming, technical, long, rushed, and overloaded. They didn t know what to expect, which did not allow them to prepare their questions. Participants were at various levels of knowledge. Participants expressed their need for more information about the options for living donor kidney transplant. Financial and insurance issues were confusing (eg, Medicare, Medicaid, private insurance, who pays what, etc.) Transplant recipient participants Some indicated their need for statistics on kidney disease and transplant whereas others did not feel they needed such information. Listed participants Some indicated their need for statistics on kidney disease and transplant, but others did not think they needed such information. Some expressed their need for more basic information such the functions of the kidney, kidney disease, etc. Participants thought the program did not adequately address how to approach family members and others about living donor kidney transplant. Some needed more information about living donor kidney transplants and the exchange program. One participant needed information about potential living donors from other countries. In-evaluation participants Most thought the program did not adequately address how to approach family members and others about living donor kidney transplant. Most felt guilty about asking and resolved themselves to not consider living donor kidney transplant. Most felt that it is very hard to approach somebody about donating their kidney. Most had lack of knowledge and overwhelming concern about the risks to the donor. Aspects of the Education Program Delivery That Need Improvement Aspects of the education delivery program that need improvement are summarized in Table 3. Most participants described the program s slide presentation as overwhelming, too technical, very long, and overloaded. Some also thought that the program was overwhelming to their companion. Participants indicated that they could not remember the content of the presentation. After the focus group facilitator listed the content of the presentation slides, most remembered the topics covered in the education program. They thought that the program was rushed and provided too much information in a short time. They also thought that they did not know what to expect, which did not allow them to prepare their questions. I don t remember the slide show at all. I mean, I remember it, but I can t remember what was on the slide show. Transplant recipient There were a lot of things I didn t understand... you know, medical terms... I don t know what the hell they re talking about. Listed participant [My wife] thought the same way I do. In parts it seemed like it was, I won t say rushed through, but it was just too much too soon and you would have to have a follow-up session just to get things straight or to write down stuff. Listed participant I didn t know what to expect from the beginning because you re sent this notice that you ve been invited to a preevaluation, and I wasn t sure what that actually meant. But what I learned, I wouldn t have missed it for anything. In-evaluation participant Participants were at various levels of knowledge about kidney transplant. Specifically in the transplant recipient and listed groups, some indicated their need for statistics on kidney disease and transplant but others did not feel they needed such information. In the listed group, some expressed their need for more basic information such as the functions of the kidney, kidney disease, and so on. In-evaluation participants expressed their need for more information about the actual surgery and related risks for living donors and recipients. I think sometimes statistics are important in your decision making. Yeah. For me it was important. Listed participant [T]he percentages of this and the numbers of that. There were too many numbers. I m not a numbers person. Transplant recipient Tell me some more basic things that are understandable to both me and my wife. Explain what your kidneys [are], the function of your kidneys and stuff. Listed participant Progress in Transplantation, Vol 22, No. 4, December 2012 407

Wilson et al Also, the procedure itself. I don t know if they re going to cut here or on my back or on the side [the surgery]. Do they leave the damaged kidneys in? In-evaluation participant [More about] the actual procedure and all the risk involved in getting an actual kidney... I m willing to take the risks, but I had to go home and read those risks on my own, what was involved... In-evaluation participant Even though most participants thought that the program increased their knowledge about LDKT, listed and in-evaluation participants thought that it did not adequately address how to approach family members and others about LDKT. This was not a common theme among transplant recipients, as most of them already had a potential donor before attending the education program. They didn t cover approaching [others about LDKT] even of your family members. They said it could be done. Listed participant It s hard to ask somebody. If you don t have family and real close friends, how do you come up to somebody and say, are you willing to be my donor? In-evaluation participant If I had to use one of my kid s kidneys to survive myself and one of those kids, something happened, that s terrible for me. In-evaluation participant The in-evaluation participants were distinguished by their resolution that LDKT was not a treatment option for them. Therefore, they believed that the information about LDKT was not applicable to them. Most of the participants in this group thought that it is very hard to approach somebody about donating their kidney and did not know how to do it. Most thought that they would donate their organs in a heartbeat but did not feel comfortable about receiving a kidney from a living person. They expressed lack of knowledge and overwhelming concern about the risks to the donor, especially if the potential donor was a young person with children. Some felt guilty about asking and resolved themselves to not consider LDKT. My son is healthy and [has] my same blood type, but he has two young children. How could I, when they tell us the risks involved, I m the type of person that thinks of those risks that if he were to donate an organ to me and he died, I could never live with myself. I could never ask my son to give me a kidney. In-evaluation participant I didn t feel that I needed to get any help about approaching other people because I really hadn t intended to approach other people. I mean, I almost feel guilty about the fact that my brother wanted to donate one of his kidneys. But I don t think I would have asked anybody alive. In-evaluation participant And the funny thing about it is my whole life, I ve always had my driver s licensed checked, even before I ever got sick, that I wanted to be a donor. And I would step up like that to give anybody else a kidney, but for me to ask somebody, I couldn t do that. In-evaluation participant Participants thought that there was an inadequate amount of information about the options for LDKT especially in the event that potential living donors were from other countries. Some of the listed participants expressed that they needed more information about the LDKT and the exchange program. Several participants thought that financial and insurance issues were still confusing despite the education program. There was a lot of discussion and confusion about Medicare, Medicaid, private insurance, and how the various plans cover transplant expenses. I m more interested on like if you have a donor somewhere else, like a different country. That wasn t really covered. Listed participant I didn t think there was enough information on [LDKT and exchange program]. Listed participant I think there was a lot of confusion with your insurance. And they said, well, maybe you want to sign up for... Medicaid. And that threw me. I m not good with that stuff... Transplant recipient When we went to our meetings, at the end they gave us prescriptions for all the tests that we had to have done. But, on the back of it, it did say that [the hospital] was paying for some of the tests. So, I was confused about that because I have my own insurance and they would have paid for all the tests. In-evaluation participant Participantsʼ Recommendations for Enhancing the Delivery and Format of Transplant Education Table 4 provides a summary of the participants recommendations for enhancing the delivery and format 408 Progress in Transplantation, Vol 22, No. 4, December 2012

Improving the delivery of patient education about kidney transplant Table 4 Summary of participants recommendations for enhancing the delivery and format of transplant education All groups Most thought the program should stay as a 1-day program. Some suggested a shorter, more condensed program; others thought that the program should remain the same length or longer, with more detail. Some suggested rearranging the education program content to allow more time in the group session for more detailed information and discussion. Most were in favor of using an online video on kidney transplant for patients and family to watch before the education program to help them get ready for the program and afterwards as a reference in case they missed or wanted to review any content. The combination of both a video and an in-person education program would be most beneficial. Most prefer having a copy of the slides before the education program. Most thought that materials given beforehand should include information about the types of kidney donation (living donor, deceased donor, exchange program) so that patients and families can consider the option of living donor kidney transplant early. Most stressed the importance of encouraging patients to bring a companion or more with them to the education program. Having a companion was described as having a second set of ears and a person to ask additional questions. Some indicated the need for specific education for companions and potential donors. Some suggested the use of an agenda and a formal invitation letter for the education program. The agenda allows patients and their companions to know what to expect. The invitation letter should encourage the patient to bring a companion and instruct patients and family members to review the materials and video and prepare questions. Transplant recipient participants Same as above for all groups. Listed participants Some thought that information about the exchange program should be sent to the potential donor rather than the patient, and also sent to potential donors when they are told that they are not a match. Some suggested a short preliminary meeting to prepare for the education day and give time to think about questions. In-evaluation participants Most felt that the program should remain the same length or longer, with more detail. Several suggested covering diet, insurance coverage, and financial issues only in the individual meetings, which would free up more time in the group education program for more detailed information and discussion. Some needed more information about the actual surgery and related risks for living donors and recipients. Some suggested using a brief follow-up meeting as patients may have questions after they go home, read the handouts, watch the video, search the Internet, etc. of kidney transplant education. Most participants thought that the education program should stay as a 1-day program rather than be split over 2 days. Some suggested a shorter, more condensed program; others thought that the program should remain the same length or longer, with more detail. Some of the study participants suggested rearranging the content covered in the education program. Some suggested covering diet, insurance coverage, and financial issues only in the individual meetings, which would free up more time in the group education program for more detailed information and discussion. I probably would say shorter, but people probably don t want to have to come back again, so maybe they could just condense it a little bit. Transplant recipient I would think break the financial and a few other things off from the main [part of the education program]. Transplant recipient One day. Let s get it over with... I m just saying just leave it like it is. Because if you split it into 2 days, after the first day you ll get people who won t come the next day... And I devoted that day for that reason only. Listed participant Listed participants thought that it would be more useful to introduce information about the exchange program to potential donors rather than the transplant candidate. For example, a listed participant stated, [Send the information about the exchange program] to the donor. Not to me, because at that point I had nothing to say about it. Another listed participant explained I think that information [about the exchange program] should go to my daughter. Because, if she is going to give up a kidney for somebody else and not me, I think somebody ought to explain it to her, not to me. Several study participants suggested the use of an online video on kidney transplant as part of the education process. Most agreed that they would prefer having access to such a video to watch before the education program and afterwards, if needed. Study participants thought that patients, family members, and potential donors could watch the video at home to help them get ready for the in-person education program and prepare questions. The video could also be used as a reference after the in-person education in case patients missed or wanted to review any content. For those who Progress in Transplantation, Vol 22, No. 4, December 2012 409

Wilson et al cannot access the video online, a CD copy could be mailed to them before the education program. Most thought that a combination of both a video and an inperson education program would be most beneficial. [A video] would be good. I think they should send us something before... so we can see what we re [going to cover]. In-evaluation participants This way any questions that you have you can write it down and be ready. It s always good to know, to have an idea about something before you walk through the door. In-evaluation participant I think the video s a good idea, because you can reference it... It s like a backup. Isn t it? In case you missed out, you could put it on and go over everything. Listed participant And after you see the video, then you can come in and we have set up a meeting for you to talk about the video and any questions that you have from watching the video. Listed participant Some of the study participants expressed that they would prefer having a copy of the slides from the education program. They suggested that reading materials (including the slides) should be mailed to them before the program. Some of the listed participants also suggested a short preliminary meeting to prepare for the education day and to give time to think about questions. Like what my school does. When we have these big meetings, and they give us slide presentations, they actually make packets; several pages stapled together would each have a shot by shot of each slide of what s going to be in the presentation and anything written to the side of it. They give it out beforehand. In-evaluation participants I feel that if they had a preliminary type of meeting with someone like a caseworker or whatever and then come back on another day where you would be able to ask any questions that you re thinking about at that time, I think it would sink in more... Just a short briefing... I would have liked to have talked to somebody first... Listed participant Study participants across all 3 groups thought that patients should be strongly encouraged to bring 1 or more companions to the education program. Most of the participants thought that having a companion attend the education program was similar to having a second set of ears and a person to ask additional questions. Some indicated the need for specific education for companions and potential donors. Well, I think it s always important to have somebody there when you re making an important decision like that. It s always important to have somebody who has another point of view... Somebody who might have a question that you didn t think of. Just the moral support of having somebody sitting there with you. I mean it s a big deal what we re going through. Listed participant I think bringing somebody with you... would be very, very beneficial not only to you, but also to the person who has to do everything for us... It s my wife that does all the cooking. It s my wife that helps me do shopping and so forth. It s my wife that hollers at me when I eat the wrong things. So, having somebody with you at these sessions, I think it s paramount... Listed participant I think [the education program] would be more beneficial to the donor as far as educating them because they re the ones that have to give their kidney away. I mean, we, as recipients, it s really not that important. We re just looking for a kidney, but it s the person that has two that s getting ready to give away one, I think it would be more beneficial for them to be educated than us. In-evaluation participant Finally, study participants suggested the use of a formal invitation letter and an agenda for the education program. The invitation letter should be used to encourage patients and their family members to review the agenda, printed materials, and a video on kidney transplant. In addition, they could be encouraged to prepare questions before attending the education program. The letter should also encourage the patient to bring a companion. Having the agenda for the education day allows patients and their companions to know what to expect. Study participants thought that using these 2 strategies may prompt patients and family members to review the topics covered in the education program and come better prepared with questions. Some of the in-evaluation participants suggested using a brief follow-up meeting as patients may have questions after they go home, read the handouts, watch the video, search the Internet, and so on. Well, maybe they could have where if they were going to invite you to this meeting, they 410 Progress in Transplantation, Vol 22, No. 4, December 2012

Improving the delivery of patient education about kidney transplant could say beforehand, would you like literature sent to you by book form or a video of what s going to transpire that day, what they re going to talk about. Because maybe some people like to read it rather than to watch it. In-evaluation participant If they send you an agenda what they re going to do, you would do more research of that. And so when you came, you just would ask questions that you needed more information on and then that would cut some of that time off that... In-evaluation participant Maybe they could have a follow-up meeting. After you have that and you go home and you read all your literature, or you go on the Internet and go into the websites and find things, then you can come back like this for a followup meeting. In-evaluation participant Discussion and Implications Several of results in this study are consistent with the findings of other studies such as using a group educational format 14 and the importance of bringing a companion as a source of moral support and an active participant in the transplant decision-making process. 20,22 Further, participants were unaware of what to expect at the evaluation day and consequently unable to prepare their questions before the education program. Participants also suggested that the program should address how to approach family members and others about LDKT, similar to the findings of other studies. 5,23-25 Participants expressed an overwhelming concern for the risks to living kidney donors, especially if the potential donor was a young person with children, which was evident in several studies. 5,23-25 The patient advocate component of the program was inspirational and useful in explaining the mindset and emotions of going through kidney transplant. This suggests the need to create a formalized, ongoing educational process to train patient advocates on the topic of kidney transplant. The participants suggestion for using a formal invitation letter and an agenda before the education program allows patients and their families to review the materials and prepare questions. The invitation letter could be used to encourage the patient to bring a companion. The participants also suggested that the materials sent beforehand should mention the different kidney transplant options (LDKT, DDKT, exchange program). This way, the patients and family members may consider living kidney donation early on and any potential donors could be invited to attend the education program. The participants suggestion for using a video on kidney transplant in combination with the education program is consistent with the findings of other studies. 14,18 Other studies have also shown the effectiveness of using interactive and mixedmethod modes of education delivery. 5,18,20-22 Future research may also explore the usefulness of mobile technology, while considering the target population of patients and their comfort with such technology. The study results also indicate the importance of a follow-up phone call or meeting. After reading the handouts at home and searching the Internet, patients may have questions that can be addressed in a follow-up meeting, which would provide an opportunity to assess patients readiness to act on possible transplant options. Further, a formal evaluation can be used to assess the effectiveness of the education program and to create a process of continuous evaluation and improvement to accommodate the needs of patients and their companions. In order to improve patient s level of self-efficacy for transplant decision making, education programs should address skills on how to approach others about LDKT. 5,23-25 This was especially evident among the participants in the in-evaluation group, most of whom were not considering living kidney transplant or did not feel sure about it. There was overwhelming concern and lack of knowledge about the risks to the donor. 5,23-25 Most of them felt guilty about asking others to consider kidney donation and resolved themselves to not consider LDKT. One person thought the education program should also target potential donors because they have to make the decision about donating. It was apparent that patients were at different levels of knowledge and consequently had various educational needs. In order to address these differences, an effective education program should assess health literacy. Health literacy is an important concept to consider when developing education programs, particularly for minority and low-income populations. Health literacy refers to an individual s ability to read, comprehend, and use medical information to make decisions. 27 Low health literacy 28 and education levels 6,12 have been associated with decreased access to kidney transplant and may contribute to patients poor understanding of kidney transplant options. 7,10,22,29 Transplant programs would also benefit from knowing the ethnic/cultural background of patients in order to provide culturally competent education. Our study has several important limitations. First, given the qualitative study design, findings may not be generalized to the entire kidney transplant population and patients seen at other kidney transplant centers. Second, our focus groups included a few minority participants. As a result, we were unable to examine cultural, racial, or ethnic differences in the transplant education experience. Third, we excluded non-english speaking participants from the focus groups, so we were unable to examine the educational experience of this important subgroup of patients. Progress in Transplantation, Vol 22, No. 4, December 2012 411

Wilson et al Conclusion Effective education of patients with ESRD is essential to ensure that patients are making informed decisions about their options for kidney transplant. The results of this study provide several implications for the delivery of patient education in a clinical setting. The importance of incorporating education methods for adult learners, including a more interactive approach, should not be underestimated. 20,22 This is especially important when we consider that most patients could not remember the content of the slide presentation. Transplant centers would benefit from performing a needs assessment before the program and an evaluation afterwards, both of which aim to continually improve the quality of their education program. Such concentrated attention to the delivery of the education programs may markedly improve patients outcomes. Acknowledgments The authors thank those who participated in the focus groups. We also thank Janice Purpura and the research staff at St Barnabas Medical Center for their efforts in recruiting and setting up the focus groups as well as Richard Warren, a student research intern, for his assistance with manuscript preparation. Financial Disclosures This project/publication was made possible by grant number R39-OT15059 from the Division of Transplantation, Health Resources and Services Administration, US Department of Health and Human Services. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Division of Transplantation, Health Resources and Services Administration, US Department of Health and Human Services. References 1. Abecassis M, Bartlett ST, Collins AJ, et al. Kidney transplantation as primary therapy for end-stage renal disease: a National Kidney Foundation/Kidney Disease Outcomes Quality Initiative (NKF/KDOQITM) conference. Clin J Am Soc Nephrol. 2008; 3(2):471-480. 2. 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