During her years as a certified prosthetist, Kierra Falbo noticed something distinctive about phantom limb pain (PLP): No two amputees experienced it in exactly the same way.
“Phantom limb pain can feel really different for different people,” Falbo says. “And what sets it off or perpetuates it tends to be different as well.” If you could understand each patient’s unique triggers and PLP sensations, Falbo reasoned, “you could target those factors in a treatment tailored to that individual.”
That’s the long-range goal of a new research project that Falbo (now a PhD candidate in rehabilitation science) is conducting through the Minneapolis VA Health Care System. The study will take detailed, real-time measurements of patient-specific PLP factors, using an innovative data-gathering approach called ecological momentary assessment (EMA). If you suffer from PLP, you might have part of the answer that Falbo and lead investigator Tonya Rich are looking for.
“Ecological momentary assessment involves repeated surveys during the course of each day,” Falbo explains. In response to periodic smartphone prompts, participants answer questions about their PLP state and other factors—such as sleep habits, diet, mood, exercise, prosthesis use, and anxiety/stress—that might affect PLP.
“It allows you to gather a lot of information on a single person as they go about their day-to-day activities, both when they are in pain and when they’re not in pain,” Falbo says. “And when you analyze that data, you can look for patterns that might tell you what factors are affecting their pain.”
The EMA study assigns patients a central role in describing and documenting their own PLP experiences. Before they start gathering data, Falbo and Rich will convene amputee focus groups to help them identify which factors should be measured.
“Our first step is figuring out what questions are important to ask,” says Falbo. “We want to zero in on things we might be able to target in a treatment—things we could actually do something about.”
“If we can identify the biggest contributing factors for an individual person, the next question is: Can we intervene on those factors to actually reduce their pain?” adds Rich, a research occupational therapist with the Rehabilitation & Engineering Center for Optimizing Veteran Engagement & Reintegration (RECOVER) program, formerly known as Minneapolis Adaptive Design and Engineering (MADE). “And if we can, how do we get clinicians involved? The ultimate goal is to find interventions that can be done in the home on an everyday basis, and that don’t require clinical visits for weeks on end.”
Above all, Falbo and Rich want to abolish the hit-or-miss paradigm with an evidence-based, patient-specific strategy.
“We can’t just keep throwing things at patients and hoping they work,” Rich says. “If we knew how people were wired and we could give them targeted, high-quality rehab, who knows what the possibilities are?”
Want to sign up for a focus group to help create the PLP survey? Email email@example.com. You do not have to be a veteran to sign up.