Disabled patients 38 per cent less likely to receive kidney transplant
By Louise Kinross
According to this research letter in JAMA Internal Medicine, American children and adults with autism, cerebral palsy and Down syndrome and end-stage kidney disease were 38 per cent less likely than non-disabled peers to receive a new kidney and 22 per cent less likely to be assessed for the transplant. Anti-discrimination laws in 40 states didn't correlate with reduced disparities in the Medicare study. BLOOM spoke with lead author Dr. Brittany Hand, associate professor in internal medicine at the Ohio State University College of Medicine and co-author Dr. Austin Schenk, a transplant surgeon at the Ohio State University Wexner Medical Center.
BLOOM: Given your study results, what do parents of disabled children need to know about transplants?
Brittany Hand: I think it's important for them to know that these laws exist and are intended to provide equal access to transplant-related care. And that our research shows that these laws may not alone be enough to close the equity gap, and that there's more advocacy work we all need to do.
BLOOM: More than a decade ago there was a lot of media coverage about children with disabilities being denied transplants. Were you surprised by the degree of disparity you found more recently?
Brittany Hand: I'm not surprised, but I am disappointed and saddened. A few decades ago there was widespread institutionalization of people with intellectual or developmental disabilities. As we progress towards greater inclusivity for people with disabilities, I think some of these disparities are lingering manifestations of our society's historical exclusion of this population. And because transplant is such a scarce resource, I think the opportunity for implicit biases to manifest is rifer than it is in other settings.
BLOOM: Austin, were you surprised by the degree of inequity you found?
Austin Schenk: That's a tough one. I certainly knew we were in a bad place several decades ago and hoped we had made strides in the right direction. But we're still measuring a significant inequality here and finding other clues that ableist biases and provider attitudes are contributing. So definitely more work needs to be done.
BLOOM: Did you find any difference in how likely a disabled child versus a disabled adult was to receive a transplant?
Brittany Hand: We didn't have an adequate sample size with the different number of states that we looked at to stratify our findings by pediatric versus adult in this study, but that is something we hope to do in the future with different data sources.
BLOOM: Studies show comparable survival rates for people with developmental or intellectual disabilities who receive kidney and heart transplants compared to the general population. But research also shows high implicit disability bias in doctors and other health workers. What role did discrimination by clinicians play in the disparities you found?
Austin Schenk: You're entirely correct that outcomes in our own research and in published research by others are equivalent, if you just compare transplanted candidates with and without intellectual or developmental disability. So, fear of a poor outcome for properly selected candidates is not a realistic concern. Our research shows unequal rates of evaluation for transplant and unequal rates at which patients are receiving a transplant. Because we're [using] a Medicaid database, we can't decipher cause and effect as much as we'd like to.
But when we put our research in the historical context, and we know from prior published literature and surveys that there were very heavy physician biases against patients with intellectual or developmental disabilities, one has to presume that has carried over and still accounts for the inequities that we see right now.
In some of our future work we're hoping to tease out a more granular understanding of why patients aren't receiving transplants at equivalent rates and a more modern day look at what are provider thoughts on this topic.
BLOOM: Based on your study, is there a part of the transplant process where you think clinician bias would be most likely to play a part?
Austin Schenk: That is a great question because the process is multi-stepped. First, patients have to be aware that transplant is an option for them. They may come to that understanding through their family or ideally a dialysis centre would tell them it's an option. That first step of awareness is one part of the process, then they should be referred to a transplant centre.
Then we have to think of the accessibility of the centre, and whether there are barriers to patients with disabilities receiving care there. Centres have the opportunity to screen referrals and not necessarily evaluate every candidate referred.
So that's another potential step in the process for which there could be dropouts for patients with disabilities. Finally, there's the formal process of evaluation, listing and transplant. There are lots of steps in the process.
We've been able to concretely measure evaluation and receipt of transplant, but we need to go all the way from the beginning to figure out where patients with intellectual and developmental disabilities are falling out. And that is certainly a part of our future plans.
BLOOM: So it could be that fewer people with disabilities even get to the evaluation.
Austin Schenk: Correct. And it wouldn't be surprising if there was some inequality at every step in the process. But if we want to look for interventions that will be most impactful, it would be helpful to understand where the biggest drop-off lies.
BLOOM: In your study you recommend three ways to reduce disparities. One is to have electronic health records tag people at dialysis centres and automatically refer them to transplant centres to bypass any bias in doctor referrals. Has that been done yet?
Brittany Hand: There is a large national initiative underway to try to improve transparency and equity in the transplant process for all patients, including patients with disabilities. This is one of the recommended strategies but to my knowledge, it's not something that is already being done.
Austin Schenk: Currently dialysis centres are required to refer a large majority of their patients for transplants but not everyone. Because there's still an element of discretion in who they choose to refer, there are opportunities for bias to creep in. We think this approach, where it would be a hands-off electronic referral for first consideration, would help.
BLOOM: Your next recommendation was to have patient or advocate representation on the transplant selection committee. Is the committee currently made up of clinicians?
Austin Schenk: It's made up of transplant professionals more broadly. So it has doctors and nurses and physical therapists and even financial coordinators and social workers. All the people who participate in transplant patient care are there, and in many ways, they are all advocates for transplant. They're professionals who have devoted their life to it.
But what we lack is either the patient themselves or a caregiver who knows the patient intimately and can really comment on relevant issues like their commitment to transplant, their ability to participate with medical care, so take medications as prescribed and come to follow up appointments. This is written about by professionals other than us, but I think bringing the patient voice into the selection committee would help.
BLOOM: Are any transplant centres doing that now?
Austin Schenk: I think there are more than 250 transplant centres in the United States. And anecdotally, I think some centres do incorporate that into their process. The idea is gaining traction.
BLOOM: Your last idea is to track patient progress through the care pathway to identify barriers to people with disabilities and other marginalized groups.
Austin Schenk: That is a little bit more underway. As Brittany mentioned, there is an Organ Procurement and Transplantation Network Modernization Initiative. That's a national effort for greater transparency.
One component of that is data gathering at every stage of the process. Those changes are forthcoming. When these data elements are available, I think many transplant researchers will publish on the topic. Certainly we will, related to intellectual or developmental disabilities. It will allow for study of disparities in access to care for many, many patient groups. Those data will be widely utilized and be impactful for shaping and changing policy.
BLOOM: I can't remember if the study referred to people with intellectual and developmental disabilities or intellectual or developmental disabilities. I'm assuming some of the people in your study had a developmental disability like cerebral palsy, but not an intellectual disability. Is that right?
Brittany Hand: That's correct. People in this study could have had a developmental disability, an intellectual disability, or both.
BLOOM: How did you get interested in this research?
Brittany Hand: My research mostly focuses on improving healthcare for autistic adults, autistic older adults, and adults with intellectual or developmental disabilities more broadly.
I saw a Twitter post from the National Down Syndrome Society about six years ago about the Charlotte Woodward Organ Transplant Discrimination Prevention Act. It was under federal consideration at that time.
I realized that there's a real scarcity of evidence on this topic and was passionate about trying to contribute to that growing body of literature. Austin and I both believe so deeply that people with intellectual or developmental disabilities deserve equal access to a holistic evaluation of whether they would be a good candidate for organ transplantation.
BLOOM: Did you have any personal experience with disability?
Brittany Hand: I do have many people I'm close to who have intellectual or developmental disabilities in my own family and [among] family friends. I also work with some adults with disabilities as community partners on my research projects. But no one in my immediate circle has experience with the transplant process.
BLOOM: Austin, how did you get interested in this work?
Austin Schenk: I'm interested in all things transplant. One reason I love the space so much is that I love the immunology associated with transplant and those research questions. I love the issues that surround organ allocation and how we allocate this scarce resource.
And then the great thing about Ohio State is there's so much happening here. Brittany found me and together we started asking questions about whether this was a problem or not. And then her research group was well established and had a nice rigorous approach to this question. And so, it's been really fun to dive into.
In my own clinical practice, I've certainly taken care of and transplanted patients with disabilities and seen great outcomes. I can think of one patient with Down syndrome who has had two kidney transplants and done extremely well.
And I can feel the benefit not only for the patient, but for the caregivers in his life. So
for me, it's just another part of the patient group that I take care of, and that I want to make sure receives optimal care.
BLOOM: Is there anything important we haven't discussed?
Austin Schenk: You mentioned parents of children with disabilities. I think self-advocacy is important. In our advisory group we have many patients themselves and caregivers who have navigated this path. And the constant theme is the need to be informed, advocate for yourself or your loved one. And if you meet resistance in the transplant candidacy process, don't take things at face value. Ask questions and fully understand why transplant is or is not recommended for your loved one.
Brittany Hand: From this work and learning from my collaborations with Austin, I’ve come to appreciate that the U.S. has one of the most sophisticated systems for transplantation in the world. Our research team believes that critical self-appraisal has historically led to improvements in healthcare systems. We are hopeful that our work will highlight important areas for advocacy and further opportunities for improvements that will lead to greater transplant equity for people with intellectual or developmental disabilities and other marginalized groups.
Like this content? Sign up for our monthly BLOOM e-letter.
