A prosthetist-turned-researcher interviewed people who had lost a leg — and found the hardest part came after, in the silence and the paperwork.
Emily Dinelli spent years fitting prosthetic limbs before she started asking what happened to the people who wore them once they left the clinic. The question pulled her out of the workshop and into a PhD.
She came to research by an unusual route — a bachelor's in mechanical engineering from West Texas A&M, a master's in prosthetics and orthotics from UT Southwestern, and then a Ph.D. in health services and outcomes research at Northwestern. With support from MIFF, her dissertation examined how the shape of a person's life — their neighborhood, their money, their relationships — bends the road after a leg is gone. This fall she begins a postdoctoral fellowship at Johns Hopkins.
First she talked to people — fourteen Black adults who had lost a lower limb to diabetes or vascular disease, each interviewed twice. She built her questions around the social determinants of health: the money, the housing, the neighborhood, the relationships, the plain ability to get to care — the forces outside the exam room that shape how a life goes after surgery. She asked about everything the operating report leaves out: getting to appointments, paying the bills, going home, being seen.
Ask Dinelli for the headline and she doesn't reach for a statistic. It's the coordination — or the lack of it. After an amputation, especially for older patients with several conditions at once, care scatters: one doctor here, another there, a therapist somewhere else, a prosthetist at a fourth facility, and no one holding the thread. The patients with the least mobility were asked to reach the most appointments, and often couldn't see why there were so many.
The headline for me, at least from the qualitative side, is the care coordination challenges these individuals face.
"The prosthetic doctor couldn't do nothing for my right leg, and my doctor couldn't do nothing about my prosthetic. So I had separate appointments, separate doctors, different days. I was running back and forth." — Kim, 61
And underneath the logistics, something quieter kept coming up: the isolation.
"Life is much lonelier for me now." One patient put it plainer: "You don't get any phone calls, nobody comes to visit you now. I don't even care."
Almost no one, in her interviews, had a single person helping them manage any of it. "There's a huge opportunity," Dinelli said, for a care coordinator — one person to help a patient understand the system and keep the appointments from swallowing them.
To see whether that showed up at scale, she turned to the records of nearly three thousand Northwestern patients of every background — 2,986 who'd had a dysvascular amputation — and asked whether a neighborhood's disadvantage predicted who did worst: readmission, a second amputation, death within a year. She didn't use the old, flawed neighborhood-disadvantage score most studies reach for; she used the improved version, built to fix its weaknesses. It predicted nothing. Not one outcome.
Her read of that null is the quiet point of the whole study. A score that estimates the risk of a whole neighborhood, she argues, is the wrong instrument — what's needed is the risk of the person. When she looked at individual-level factors, one cut through: patients who did not speak English fared worse than those who did — a sign, she suspects, that they weren't getting the same explanation of what to do next.
We really need individual-level measures of social risk.
The study is observational; it can point, not prove. The next step is a test she can run: give some patients a care coordinator, give others the usual care, and watch what changes. Do they walk sooner? Stay out of the hospital? And women with diabetic and vascular amputations, she notes, are badly understudied — like so much of women's health — and need research built around them. "There's a lot we could do," she said.
Dinelli's dissertation research was supported by MIFF. Her findings are spread across three manuscripts — on healthcare access, participation experiences after dysvascular amputation, and area-level social risk.
