Our forthcoming November/December print edition includes an article about the Decision-Making Aid for Lower Limb Prosthetics. The tool, which is still in beta form, gives amputees a framework for selecting the devices that best fit their day-to-day needs. It’s also part of a broader trend throughout US healthcare toward shared decision-making, which encourages tighter communication and collaboration between patients and practitioners.
“There’s a group in Australia that made a shared decision-making tool for deciding what level of amputation to have,” explains Chelsey Anderson, a certified prosthetist and rehabilitation scientist who spearheaded the development of the prosthesis decision aid. Shared decision-making is highly encouraged under the Affordable Care Act, which went into effect in 2014. Ever since, says Anderson, cancer treatment, palliative care, pediatrics, and other medical specialties have pioneered new ways of putting shared decision-making into practice.
We didn’t have room in the print edition to quote Anderson at length, so we’re taking this opportunity to share more details about the hows and whys of the prosthetic decision-aid, along with a general map of the road ahead. If you’re interested in checking out the beta version, it’s available here. The journal article describing the methodology that underlies the decision-making tool is online at Prosthetics and Orthotics International.
Our conversation is edited for length and clarity.
Is this model specifically designed for new amputees who are choosing a prosthesis for the first time? Or is it meant to support decisions about prosthetic devices throughout a person’s lifetime?
For this study, we developed the tool for new prosthesis users. However, a lot of amputees in our working group gave feedback that this was a resource they would pull out again and again. People experience changes in values and changes in preferences throughout their lives, and technology changes as well. The amputees we worked with were all experienced prosthesis users, but a lot of them said they would return to this model to help them with future decisions about their prosthetics.
Did you encounter any resistance to this idea from prosthetists themselves?
That’s an interesting question, because there’s a body of research out there which shows that a lot of clinicians think they’re already doing shared decision-making. They feel like they’re already proficient in it. But when you examine it from the patient perspective and in other ways, that’s not necessarily true.
In my work on this project, I didn’t come across any resistance to the whole idea of shared decision-making, but certain aspects of it were questioned. Some prosthetists talked about how it can be intimidating to a new prosthesis user to be exposed to all the options. There are so many variables that it can be overwhelming. As prosthetists, we’re trying to help make that information digestible to a new amputee, especially when they’re dealing with other health issues and going through the emotional change of losing their their limb. It’s not always well received to be bombarded with a bunch of information about options. So there was a question about how to present options to new prosthesis users while being sensitive to how much information they can actually digest.
I’m going to take a wild guess that amputees were very receptive to the idea of a decision-making aid.
Totally. We presented the idea to a group of patients at Hanger’s education fair [Hanger LIVE], and it was incredibly well received. The feedback was that something like this would be wonderful in the pursuit of care. A lot of people we talked to didn’t realize all the factors that could go into choosing a device. They just said, “I based my decision on whether the prosthesis had toes on it or not.”
How did you decide what factors to include in the decision-making aid, and which ones to leave out?
One of the things we learned in our needs assessment is that there’s huge variation among patients in how much information they want in their interactions with their prosthetist. You know, and some people went through every page of the documentation that was brought to them in the hospital. The Amputee Coalition has a resource that’s 120 pages long, and some people went through all of it. And other people didn’t start thinking about prosthetics until they sat down with their prosthetist for the first time. So we felt we needed to set that as a baseline—to help prosthetists and patients figure out what we need to talk about, how many things we need to go over. That’s a pretty standard starting point for decision aids in healthcare.
I did have some prosthetists tell me they already do this type of assessment. They do it almost subconsciously. They’re going into the room, asking questions, reading body language, and drawing conclusions about what to talk about and how much information to go over. The purpose of the decision aid is to set more of a foundation for that and help patients communicate what they actually want, versus just letting those assumptions happen in those initial visits.
The next section—again, pretty standard for decision aids—is for people to prioritize what matters to them when they’re making these decisions. [The tool lists 13 “values” such as cost, maintenance, sports, comfort, travel, family, aesthetics, etc.] The idea here is for patients to rank these in order of importance, from first to last. Some of them might not be on everybody’s list. A few people in our working group talked about the sound of different parts on their prosthesis—some of the suspension options, the seal-in liners, or the electronic components could have a sound that bothers them.
Did people talk about leg farts?
Exactly. It’s embarrassing, right? But some of the other amputees in our working group, and even some of the prosthetists, were not clued into that at all. And that’s part of what I’m hoping this tool will do, is to spark questions about things that a user might not think to ask about otherwise. Another one was flip-flops. For some of our users, it was really important to have feet they could wear flip-flops with. If you’re a new user, you probably wouldn’t know that’s even an option. So we made a point of including that in the tool. Sometimes even just seeing the question makes it okay for you to ask it, too.
What are the next steps? When will this be available for general use?
There’s a standard, agreed-upon process for how to develop shared decision-making tools. And that’s for a good reason. You can make a tool, and people can use it, but that doesn’t necessarily mean shared decision-making is actually happening. It doesn’t mean that patients know about all their resources or choices. So the next step for this tool would be to do some formal testing to see if it’s actually helping with shared decision making. So I’m looking for some collaborators and some funding to do an actual clinical trial.
In an ideal world, we’d roll it out in an actual clinic, or a few clinics, to get it into the hands of prosthetists and prosthesis users. There are various measures to quantify how much shared decision-making is happening. We’d set up some some checkpoints to compare decisions that are made with the tool against interactions where it’s not being used. In the future, I could imagine this as something that gets sent to a patient before they even come see a prosthetist, or even in their initial consult for the actual amputation.
Another point we considered is that most shared-decision aids are focused on a single decision. But getting a prosthesis involves lots of decisions—there’s a foot, ankle, socket, liner, suspension system. We made a conscious decision not to list all of those options in this version. This is just an overview. But in an ideal world, if these tools were online, we could potentially link to other decision aids that would help people get into the nitty gritty of what’s available and which option fits their needs.
In the end, we want a tool that gives prosthesis users a big-picture idea of how their life with a prosthesis might go and what decisions they might make in the future. Knowing what that roadmap looked like, and what could affect those decisions down the road, was the most important concept.
that’s what the limitation is. You know, that’s why it’s like, you know, if you get one and you find out after six months that it’s not really working for you, the insurance company is not buying you a new one. You know
