 So our first speaker today is going to be Professor Eliza Gordon. Dr. Gordon is a research associate professor in the Institute for Healthcare Studies and the Department of Surgery at the Feinberg School of Medicine at Northwestern University. Her research interests include the ethics of organ transplantation and donation, determinants of disparities in access to healthcare and human subjects research ethics. She currently serves on the Ethics Committee of UNOS and has been actively involved in the American Society for Bioethics and Humanity. Professor Gordon will speak about Hispanic attitudes and beliefs about living kidney donation, a focus group study. Welcome back. Hi. Good afternoon. I wanted to thank Dr. Siegler for inviting me this year. I really appreciate being a part of the whole McLean Center before I get really started. I wanted to acknowledge my funders for this project, HRSA Health Services Research Administration, and the Eleanor Wood Prince Grants Initiative of the Northwestern Memorial Hospital, as well as my research team. Okay. As you know, there's a huge organ shortage nationally and internationally, and in order to address this shortage, there have been a number of efforts to increase the organ supply. Living kidney donation is one of those efforts that is increasingly being relied upon, although the rates remain quite low across the board. In particular, among minorities, there are considerable disparities in terms of getting access to living kidney donor kidneys. In particular, need disproportionately more kidney transplants in general, yet they receive fewer living kidney donors than non-Hispanic whites and other groups. Just to give you an example, of those patients undergoing living kidney donation in the United States in 2011, 13.8% were Hispanic, 66.9% were non-Hispanic whites. So there's quite a difference here. The problem is that we don't really know much about the factors that contribute to these disparities in Hispanics in particular. There's been quite a bit of research among African Americans, unfortunately very little done in Hispanics, and that which has been done in the Hispanic population, there have been some great researchers out in California, Alvaro, and Siegel, they've really pointed out that there are cultural beliefs and lack of knowledge and attitudes, but that's kind of like as far as they've gotten, they haven't really delved deep into what's going on. And so that's something that in my study I've sought to look into. So let me give you, before I go into it too deeply, I wanted to give you a little bit more of a back story. For the grant that I got funded, I got funding to develop a website that's culturally sensitive and tailored to Hispanics with the goal of increasing knowledge and positive attitudes about living kidney donation. With HRSA funding, you're not allowed to increase rates of living donation because there are still concerns about long term safety, that's still quite controversial. So HRSA will say, okay great, we'll grant you funding in order to increase knowledge and attitudes, and I think that's very important particularly in this patient population. So I've taken a number of steps in order to develop this website, in particular the content of the website, in order to make it culturally sensitive and culturally tailored, I want to make sure that I'm addressing key concerns, key questions, any myths, any cultural misconceptions. And so I wanted to understand a little bit more about those issues and what the barriers might be for living kidney donation in Hispanic or Latino population. I use Hispanics but I use it to refer to Hispanics, Latinos, rather. So I conducted a series of focus groups among four different participant types. There were kidney transplant recipients, living kidney donors, dialysis patients, and members of the general public, all of whom were members of the Hispanic population in the Chicago land overall. So there were, we conducted the focus groups all over the Chicago land area. My partner in this project overall is with the National Kidney Foundation of Illinois. They've been great to work with. And so we conducted the focus groups at their location, the EyeBank at the Mexican Consulate. They've been fantastic as well. All of them, community centers in North Chicago, South Chicago. The focus groups lasted approximately 120 minutes, 90 to 120. We audio recorded them. And so here's just a little bit of a background on the focus group characteristics. I'm not going to get too deep into these. I really want to get into some of the themes that emerged. So we conducted two focus groups of the general public. These were both in Spanish for a total of 25 participants. Two focus groups with dialysis patients, both in Spanish with 12 patients. And the unique thing about the dialysis patients, so many of those participants were undocumented immigrants. So we got really interesting insight into those concerns. So it was really through our contacts with the Mexican Consulate that they were able to help us recruit that patient population. So I feel very lucky for that. We also had three focus groups with the kidney transplant recipient population. And the recipient and the donor population were all of Northwestern patients overall. And then two with the living donor group. And so we had a total of 76 participants overall and nine focus groups. So I want to turn now and identify some of the key themes that emerged. So as I mentioned earlier, lack of knowledge has been identified in the literature, but what really is it that people aren't quite getting or don't know? So there's just general lack of knowledge about living kidney donation, lack of understanding even that there's a difference between living donation and deceased donation. So that's kind of fundamental to know that there is a difference. There's a lack of knowledge in Spanish and that's really problematic. There's just not enough websites out there or educational pamphlets or the dialysis technicians. They don't necessarily speak Spanish. So the information that's provided to people is just not available in Spanish. A lot of Hispanic participants attributed the lack of knowledge to that there's just ignorance in the community. There's a lot of misinformation among the Hispanics in the community kind of just trying to explain this. And then here's a quote. I feel that the principal factor in the Hispanic community, nobody speaks of transplantation. Part of the issue is that people don't really talk about it unless it comes up as an issue, unless there's a patient in the family who draws attention to the matter in and of itself. Otherwise there's no reason to think about it. Another concern has to do with conceiving and protecting future children. So there's a belief that donation would inhibit a woman's ability to get pregnant or impair a man's fertility. So it was really interesting that both men and women, or both women and men, were, you know, they were both in people's minds about protecting the potential donor. So there was also this sentiment that older Hispanic patients do not want to accept a kidney offer from their adult son or daughter, especially when the donor is young, unmarried, and has no children. So I'm afraid that something might happen. They won't be able to have children in the future. And then there's a concern that the donor's children would need a kidney in the future. And that the donor would no longer be able to help their child. Here's a quote. The risk my children were being placed through on top of that, they are young, single, and never married. I was interested in knowing if their reproductive life would be effective. If she'd be able to have kids, that had me really worried, more worried for my daughter than worried for myself. And that was a recipient. Another concern that emerged was that the donor's lifespan would be shortened. So they all pretty much expressed this fear that seems to be common in the community that donating would shorten the donor's lifespan. So as one person, one recipient noted, it's all fear of the opinions we have heard. If I give my kidney, I'm going to die sooner. That's the principle of fear. Another, to me, this is a really fascinating issue that came up, concerns about the donor's kidneys. People didn't quite understand that kidney disease attacks both kidneys simultaneously. So if you're going to get kidney disease, both kidneys are going to be affected. And so, you know, there was a concern that diseases later in life would have a greater adverse effect on living kidney donors because they would only have one kidney left. And donors are at greater risk for kidney failure with one kidney than if they had both kidneys. Other concerns that came up particularly in the donor focus groups was about the donor lifestyle, like would they have to change. The donor and recipient participants questioned whether donating would adversely affect the donor's ability to resume a normal lifestyle. They desired more information from the transplant center about what donors would and would not be able to do after donation. You know, I've gotten that impression just in my own other prior research with living donors, with kidney and liver donors, that they just want to know more about how do I prepare for donation? What am I supposed to do afterward? And here, this emerged again. Nothing necessarily unique to the Hispanic population, but kind of a concern overall about donors. So here's some examples. Donors raised concerns about the need to avoid or to take precautions when drinking alcohol, sizing or taking pain medications or nutritional supplements. And here's a nice quote. I've actually reduced my intake of liquor. You know, half a beer, a glass of wine, whatever, but I always in the back of my mind I say, I do have one kidney and I need to take care of that. So not only am I watching my diet and changing my diet overall, I'm also not having as much fun as I used to. And the room left, so we all know what they're getting into here. Okay. So, you know, I just want to conclude, I know we're running out of time here, but, you know, as far as the limitation, as you know with focus groups, you can't necessarily generalize to all people. I think we got a really nice perspective of Hispanics in the Chicago land area. And, you know, certainly good themes emerge from these issues, from these focus groups. So we identified some cultural concerns or concerns in general and beliefs or misconceptions about living kidney donation and donor outcomes that many of the participants shared. As I mentioned, most notable were the misperceptions regarding the inability to have children, the greater susceptibility to kidney disease, and the shorter life expectancy after donation. There's been some fantastic research published in JAMA by folks at Hopkins, Segev's work, regarding the lifespan being pretty much comparable, and if not even better, because living donors are screened so carefully prior to donation that, compared to the general population, a matched sample that their life expectancy is just as good. And so understanding barriers is quite essential for informing any intervention to redress these disparities in living kidney donation. And so I just want to comment with regard to my next steps. Now that my website is almost done, we're about to embark on some usability testing, and then we're doing some evaluation to see really whether this is, in fact, effective in Hispanic patient population, for patients, family members, those coming to get evaluated for a transplant, those on dialysis, and to see if it does, in fact, increase knowledge and positive attitudes about living donation. So maybe next year. Thank you.