Access and Utilization of Healthcare by Adults with Spina Bifida - Lindsay Hampson & Alejandro Lopez

January 17, 2024

Lindsay Hampson and Alex Lopez discuss their research on healthcare access and utilization by adults with spina bifida. The study, conducted via a Facebook-distributed survey, reveals significant barriers to care, including distance, provider inexperience, and trust issues. Notably, 39% of the 270 respondents hadn't seen a urologist in the past year. Many reported traveling over 30 miles for urologic care, with long wait times and high healthcare utilization. The study finds that 29% visited the ER for urologic conditions in the past year, and 18% were hospitalized. Insurance status, particularly private insurance, influenced ER visits. The discussion highlights the need for improved transition from pediatric to adult care, emphasizing the role of primary care providers in managing these complex patients. The findings underscore the challenges faced by adults with spina bifida in accessing appropriate healthcare and the potential policy implications for improving their care.


Lindsay Hampson, MD, MAS, Urologist, UCSF, San Francisco, CA

Alejandro Lopez, UCSF School of Medicine, San Francisco, CA

Ruchika Talwar, MD, Urologic Oncology Fellow, Department of Urology, Vanderbilt University Medical Center, Nashville, TN

Read the Full Video Transcript

Ruchika Talwar: Hi everyone, and welcome back to UroToday's Health Policy Center of Excellence. Today we'll be discussing access and utilization of healthcare by adults with spina bifida, in a discussion led by me, with two researchers from UCSF.

First, I'm joined by Dr. Lindsay Hampson, who's an associate professor of urology. And in addition, we have Alex Lopez, who is a medical student at UCSF, both of whom have been pioneering this work recently published in the Gold Journal. Thank you both for being here with us today.

Lindsay Hampson: Thanks so much for having us. We're excited to get a chance to highlight this important work and really appreciate the time to have the conversation.

Alejandro Lopez: So again, my name is Alex Lopez. I'm one of the co-authors alongside Dr. Hampson on this paper, Access and Utilization of Healthcare by Adults with Spina Bifida.

So I really wanted to just start by introducing the why and the how to this paper. Primarily, what we wanted to do with this paper was to contextualize the challenges that persons with spina bifida encounter in adulthood specifically, by examining their healthcare access patterns, readiness for self-management of care as adults, and then their utilization of healthcare overall.

We collected all of our data by survey, which was distributed via social media, Facebook specifically. And these adults were asked about distance, ease of access to care, and several other ease-of-access-to-care factors, as well as care management via the Transition Readiness Assessment Questionnaire. And then hospital admissions, ER visits, and other medical visits they had over the past year.

In terms of results, one of the most impressive demographic results that we found was that of the 270 eligible respondents, about 39, a quarter had not received care from a urologist in the past year. Furthermore, we found that patients with SB tend to report poor access to healthcare.

Some of the most notable barriers to care included distance, providers' insufficient understanding or experience to provide the care that these patients needed, a lack of trust in their providers, or an inability to take time off for appointments.

We found that about a third traveled at least 30 miles to get access to urologic care, with 17% traveling over 60 miles. And we found the wait times to see urologists were prohibitive, with 28% reporting waiting greater than or equal to three months to get in, and 70% saying that they were currently looking for urologists, or had been looking for more than three months.

Patients with spina bifida also reported very high healthcare utilization, with 17% missing at least one scheduled visit for their urologic condition in the past year. 29% reported they visited the ER for their urologic condition in the past year, with 8% having more than three ER visits, and 18% saying they were hospitalized in the past year for their urologic condition, 4% of those saying they had been hospitalized more than three times.

Using multivariate analysis, some of the predictors of healthcare utilization that we found, for missed medical visits specifically, were the number of past surgeries, and having any ER visits related to their urologic condition in the past year were shown to increase missed medical visits, with increased physical function showing a decrease in missed medical visits.

For ER visits specifically, private insurance was shown to decrease the number of ER visits. And for hospital admissions, missed medical visits in the past year and the number of past surgeries were both shown to increase hospital admissions, with identifying as a female shown to also increase hospital admissions.

Ruchika Talwar: Thank you. I think your data brings up some really important points. First, I'd like to focus a bit on this idea of insurance status, and specifically who the payer is for these patients. So Dr. Hampson, I'm curious to hear your thoughts. This is a challenging population because they really span the pediatric urologist clinic. And then when they transition into adulthood, it can often be challenging as they lose insurance coverage beyond the age of twenty-six.

And you did show that having private insurance reduced the likelihood of an ER visit. What are your thoughts on how we could better tackle this from a policy perspective, looking at providing preventative care in this population through insurance?

Lindsay Hampson: Yeah, I mean this is a huge problem for this patient population. So as you mentioned, there's a lot of really difficult transition points for these patients, and one of them is navigating that, just the transition from pediatric care to adult care. And then one that goes along with that, but is not necessarily always correlated in terms of time, is also their insurance.

And often there's a transition that needs to be made with the patient finding these adult providers, and actually transitioning all their care. And they may actually do that while they're still on their parents' insurance, or some of these patients are on state-provided medical insurance.

And then they may reach another difficult transition point where they may be established with care, and then have to find new insurance coverage, new providers. And they either don't have the social support resources, there's no social workers, there's very little case management on the adult side compared to the pediatric side in order to plug them in.

Or they find that the providers that they've been established with now don't take their new insurance, and so now they're having to navigate a whole other transition there.

So I think there's this really critical time period from, probably around age eighteen to age thirty for these individuals, where there's so much change happening external to them. But in addition, it's a really critical time point for their healthcare. Because sometimes they're outgrowing these surgeries that they've had done in childhood, that now are no longer working for them or beginning to fail.

And so it's just this super challenging time where everything seems to be falling apart for them. And what we really need to do is focus on, okay, how do we back up and make this transition smoother? And that, I think, means a lot of things. It means really making sure we establish adult care for these patients when they're really plugged into pediatrics.

So at our institution, this discussion starts happening at age 12 to 14, that we start talking about the upcoming transition and planning for it. It means that we need really good social support to make sure that they get hooked in with adult providers, and also are thinking about the insurance changes that might be coming up. So there are a lot of things that we need to do in order to make sure that they're plugged in before they reach these really challenging transition points.

Ruchika Talwar: Yeah, I couldn't agree more. And I think it's an important point to note that although urologists are an integral part of these patients' care teams, there are other services that need to be involved as well. And often, even within one specific hospital system or health system, certain providers take specific insurance mechanisms, but others don't. So I think it's really important to be mindful of all of that.

Tell me a bit about the emergency room visits. You presented the numbers, but I'm curious, did you in your study assess what the length of stay was, or what the reason for admission was? What's driving that finding?

Lindsay Hampson: Yeah, I think we unfortunately don't have a lot of granular data about why those ER visits happened. So this was really a broad look to get a lay of the land. And one of the reasons that we wanted to, I mean, this survey had a lot of components to it. So whenever you're making a survey study, you have to draw some lines somewhere.

But one of the reasons we were particularly interested in this broad landscape was because a lot of the studies of this patient population looked at those patients who are plugged into care. So institutions are looking at their own patient base and seeing what is happening with those patients. And we were really interested in saying, okay, but what about all these patients who aren't plugged in? And how do we reach them?

And that's actually why we decided to use the social media format to try to launch this study. And we did this back in 2018 when Facebook was more of the, I would say, more of the social media driver. But it was a really interesting way, we thought, of trying to get at this population to try to understand their connectedness to healthcare.

Because it's very difficult in studies to assess a patient population who isn't plugged in with care. And as we saw in this study, there are a lot of these patients who aren't plugged in with care, despite the fact that they've had many urologic surgeries in the past.

They're going to the ER, they're getting hospitalized. Half of our patient population, about, had VP shunts. So these are patients who have a lot of medical need, and yet aren't necessarily getting plugged in.

So I think a perfect question for more studies, and I think there's lots of questions that arise from our research, is what are they showing up to the ER for? And we're currently using statewide data in California to actually evaluate that. What are the reasons they're showing up to the emergency room? How often are they coming back to the ER? What's the length of time in between hospital or ER visits?

So there's such a wealth of data that we don't know about this patient population, and specifically because we've been, I think, very focused on them in childhood. And now we need to look at them across their lifespans.

Ruchika Talwar: Yeah, there is a lot of data that hopefully will continue to shed light upon potential solutions, many of them being policy-based. But I'm curious, what is your message to urologists who see patients from the spina bifida population today? What can they do to try to optimize health outcomes and decrease healthcare utilization in this setting?

Lindsay Hampson: Yeah, I think one of the most important things is actually just making sure these patients are plugged in with a primary care provider. Honestly, that is kind of my number one thing when I see these patients.

Because often, as we saw, their touchpoint to a urologist is challenging. It's long distances that they're going, it's hard to make these appointments. And your primary care provider is often a kind of easier touchpoint for people. And so at least it provides them with some access to care, and hopefully preventative care.

And so I think one of the biggest things, one of the biggest messages I have, whether it's pediatric urologists or adult urologists who care for these patients, is making sure that they get plugged in with a PCP.

Because often in the spina bifida world, when they're in their multidisciplinary spina bifida pediatric clinic, they have great surround care, they have a social worker, they have a case manager, they have a PM&R physician who's really taking the lead on their care. They have neurosurgery, nephrology, and all these people plugged in.

And they often don't even have a pediatrician, because their care is really being driven by that multidisciplinary clinic. And so when they become adults, it's really critical to make sure that they get plugged in not only with having a pediatrician but actually transitioning over to an adult care provider.

And I think it's really hard because these are complicated patients, and so a lot of times it's difficult to find a primary care provider who actually feels like they can care for these patients. And the message that I have there is really, it's a partnership. So if they can partner with a urologist to help provide care, and context, and understanding, it doesn't have to feel so overwhelming.

And in reality, I think the most important thing is just to have a local person who's your point person in contact, so that if you have infectious symptoms, you have somebody who can evaluate you. If you're not feeling well, you have somebody who can evaluate you. So I think it's a challenge, but it's a really important one.

Ruchika Talwar: Yeah, especially for patients who are in rural settings, I think that is critical. Whether it's having, definitely, a primary care physician who can handle all sorts of global healthcare-related issues, but also a urologist who particularly may not feel equipped to handle complex situations in these patients, often with extensive histories.

But at least, like you said, have somebody there to screen what needs to be bumped up, perhaps to a center of excellence, or what can be treated or managed conservatively, without needing to travel that long distance or getting transferred to that major center.

And there was an interesting finding: the odds of hospital admission being higher if the patient had a urologist. I think that's a reflection, like you said, of the fact that often these patients who have ongoing issues are in this multidisciplinary clinic and are already plugged in. But I just wonder how many patients we're not capturing, not getting that urology care that they need. So I think you bring up some really great points.

Lindsay Hampson: Yeah, I think I also was interested in that finding of increased hospitalizations being tied to the patient having a urologist. And I do think that that's probably because these patients do need ongoing care, and often they do end up needing hospitalization. And probably those patients who have a urologist are actually getting in for that care a little bit more. And they're probably, hopefully, using emergency room access as their touchpoint a little bit less.

And I do think that it's interesting that we saw that those patients who are using the emergency room, these are patients who are missing visits. These are patients who are not necessarily plugged into care, and so they're using the emergency room as their access point.

And if we can take a step back and think more about preventative care and making sure they're plugged in, hopefully we can decrease emergency room utilization, which is of course a really expensive and kind of impractical way, not to mention a huge amount of time and energy for the patients to access care that way, too.

Ruchika Talwar: Yeah, I think that this population of spina bifida patients within urology is certainly one where we can do a lot better in terms of the quality of care that we provide, the care coordination. And ensuring, like you said earlier, that these patients have a coordinated team to try to prevent the costly care that's required once they seek evaluation in the emergency room.

So thank you both so much for joining us. I know that this is an early study, it's a survey study with limitations, but I think it's a great start to exploring how we can provide better care for our spina bifida patients.

Lindsay Hampson: Yeah, thank you so much for having us. And looking at this data, we just think the possibilities of the questions for us to ask in order to provide care for these patients are pretty endless, and that's both a challenging and exciting spot to be in.

So we look forward to doing more research in this area and trying to improve care for these patients moving forward.

Ruchika Talwar: And we look forward to hopefully spotlighting your future work. And to our UroToday audience, thank you so much for joining us for this important discussion. We'll see you next time.