Neuropathy May Be Underdiagnosed and Undertreated

“This study makes it clear that what we know about neuropathy and the number of people affected by it likely does not represent all the U.S. population,” says first author Melissa A. Elafros, MD, PhD, the Andrea and Lawrence A. Wolfe Research Professor of neurology at the University of Michigan Medical School in Ann Arbor. These findings also highlight the need to improve the management of risk factors for the condition, she adds.

This type of neuropathy has been associated with higher risks of falls, heart disease, and mortality, says Caitlin Hicks, MD, a professor of surgery and the director of research at the Multidisciplinary Diabetic Foot and Wound Service at John Hopkins Medicine in Baltimore.

“Early recognition and risk factor management are critical to prevent the long-term morbidity associated with the disease,” says Dr. Hicks, who was not involved in the study.

Study Seeks to Address ‘Huge Gap’ in Research on Neuropathy in Some Communities

Most studies on neuropathy and its impact on quality of life have overlooked minority and low-income communities like Flint, says Dr. Elafros, which prompted her team to launch the Flint Neuropathy Study.

“Diabetes is one of the main risk factors for developing neuropathy, and we know that low-income, underserved populations in the United States often have higher rates of diabetes, as well as more diabetes-related complications,” she says.

Researchers Found Nearly 3 out 4 People at Flint Clinic Had Neuropathy

The study included 169 people who were 58 years old on average. Among this group, 69 percent were non-Hispanic Black, 3 percent were Hispanic, and 28 percent were white. Nearly half had an annual household income below $20,000, 34 percent were on disability, and 37 percent reported food insecurity in the last three months.

Participants completed questionnaires about pain and how much it impacted their ability to do everyday activities like washing their hair, going out, or working around the house. They also underwent an exam by a neuromuscular neurologist — a doctor who specializes in neuromuscular disorders like peripheral neuropathy and ALS, or Lou Gehrig’s Disease — to have their signs and symptoms evaluated with a validated and commonly used scale.

In the United States, the accepted prevalence rate for neuropathy is 13 out of every 100 people, says Elafros. “Among the adults that participated in our research study, we found that 73 out of every 100 had neuropathy. That’s a huge difference,” she says.

Hicks believes one contributor to the high rate could be the test used in the study used to define neuropathy. Other research, including her own, often relies on monofilament testing to identify neuropathy, which is less sensitive in detecting mild and moderate disease.

That means they were able to identify people with less severe disease in this group of mostly Medicaid patients, says Hicks.

The Majority of Participants Also Had Diabetes and Metabolic Syndrome

Neuropathy was not the only chronic disease among participants. Over half had diabetes and two-thirds had metabolic syndrome. These conditions were often poorly controlled, even though many saw their doctors frequently.

Both diabetes and metabolic syndrome are common risk factors for peripheral neuropathy, according to the authors.

“While we did not design this study to determine why there may be gaps in care for medical problems with diabetes, our findings do raise concern that more could be done to address these chronic medical problems to prevent problems like neuropathy,” says Elafros.

Many People with Neuropathy Had Never Been Diagnosed, Despite Having Symptoms

Researchers also found that most people with neuropathy didn’t know they had it. “The majority of neuropathy cases were initially undiagnosed, although over half of the participants reported symptoms of neuropathic pain,” says Elafros.

Partnering with community members and primary care providers will be critical to find out why this gap in diagnosis exists and what can be done to address neuropathy risk factors to improve health outcomes, she says.

“Because there is no cure for neuropathy, most of our management consists of helping to control pain and counsel patients to prevent falls and foot trauma that can lead to cuts, infections, and, even worse, amputations,” Elafros says. But without a diagnosis, none of this happens, she adds.

The key to treatment, says Hicks, is risk factor prevention: identifying and managing metabolic syndrome, a group of risk factors including high triglycerides, blood pressure, and blood sugar, as well as abdominal obesity and low HDL, or ”good” cholesterol.

“This prevalence of new diagnoses is extremely high and represents a real opportunity for health delivery initiatives that focus on preventive, rather than reactive, care,” she says.

Neuropathy Lowers Quality of Life

Even people in the study who had mild to moderate neuropathy reported overall worse quality of life than participants without it, says Hicks.

“This finding highlights the potential emotional, social, and activity-related impacts of the disease, and further reinforces the need for preventative action,” she says.