Limb-loss rates are stubbornly high in rural America, especially among people with diabetes and peripheral artery disease. In a brand-new study in the Journal of Vascular Surgery, dozens of rural amputees shared their insights about why this problem persists—and how the US healthcare system can do a better job of serving people at risk of limb loss.
Written by researchers from Duke University and the University of West Virginia, the paper focuses on a segment of the limb-loss population that Amplitude described earlier this year as “living in the shadows.” These individuals are older, less affluent, and more isolated than the median amputee, and they’re more likely to experience limb loss in combination with mental health issues such as depression and anxiety. Many are struggling with what researchers refer to as “diabetes distress,” caused by the endless burden of day-to-day attention to one’s diet, exercise, blood pressure, and medications. A 2023 study showed a correlation between diabetes distress and limb loss, concluding: “It is important to address psychological and emotional challenges at an early stage to help reduce the risk of foot deterioration and/or amputation.”
Those are some of the challenges the JVS paper addresses. The study examines limb loss patterns in West Virginia, one of the most rural states in the nation. An analysis of hospital discharge data pegged West Virginia’s amputation rate at 12 per 1,000 patients, versus a national average of 2.4 per 1,000 patients. (Those numbers reflect a combination of major and minor amputations.) The amputations clustered in rural zip codes with below-average incomes. Based on demographic data alone, the paper identifies three factors that significantly increase the risk of limb loss among West Virginia residents: Medicaid enrollment, rural residence, and diabetes combined with peripheral artery disease.
The authors combined this statistical analysis with a qualitative investigation to determine the lived realities driving West Virginia’s high limb-loss rates. They conducted dozens of interviews with amputees, individuals with diabetes, caregivers, and healthcare providers, and came away with four main themes.
EDUCATIONAL BARRIERS
This was the most commonly cited factor, both among patients/caregivers and healthcare professionals. Patients expressed the opinion that they lacked access to medical information, for reasons that included geographic distance from health centers and poor communication with doctors. “We educated ourselves,” one patient told the research team. “It’s just like, I was on the internet.” Healthcare providers tended to cite patients’ neglect or misunderstanding of the information they received, although they acknowledged that many nonspecialists (such as primary-care physicians and emergency room personnel) didn’t fully grasp the risks of vascular disease and foot ulcers vis-a-vis amputation.
LACK OF CARE ACCESS AND COORDINATION
Simply getting to the doctor poses an economic barrier for the rural patients in this study. Many live an hour or more from the nearest medical facility and don’t have the time, vehicles, and/or money to make frequent trips. Some patients had to pay for rides each way, which can be prohibitively costly. Moreover, rural Americans are disproportionately uninsured or have bare-bones plans with high deductibles, co-pays, and other out-of-pocket expenses.
But even when they spend the time and money required to get adequate medical attention, patients have to interact with multiple specialists and facilities that don’t collaborate very well. “Providers identified care coordination as one of the most important avenues for improving the quality of care,” the paper asserts, citing the need for better integration among podiatrists, vascular specialists, wound-care specialists, and other providers. Rather than expecting patients to manage their own complex cases, providers need to synthesize their recommendations into a unified treatment plan that’s simple to follow.
RURAL GEOGRAPHY AND CULTURE
West Virginia’s geographical distances are compounded by mountainous terrain that lengthens travel times. One interviewee described how every wound-care appointment required an overnight trip. Others faced three-hour journeys each time they needed to see their health providers. In addition, providers sensed that many of their rural patients simply lacked trust in the medical system. “People are very enculturated to be afraid of medicine,” one doctor said. Rural communities place high value on hard work, perseverance, and sacrifice; individuals are admired for “toughing it out” through health challenges, while downplaying the risk of serious consequences. These cultural factors combine with economic and logistical barriers to prevent many individuals from seeking consistent, effective treatment that might preserve toes and/or limbs.
DEPRESSION AND FATALISM
In addition to facing structural and cultural barriers to top-notch healthcare, many patients acknowledged they didn’t always make the best choices. One admitted that he refused to wear wound-protecting shoes out of sheer stubbornness. Others conceded that habits such as drinking, smoking, and tobacco-chewing may have contributed to poor health outcomes. “Mine was just caused, by depression pretty much,” said one. “I wasn’t taking care of myself.”
Healthcare providers described these behaviors as being driven by a lack of agency. Some patients don’t even try to control their diabetes, one health professional explained, because “they don’t feel like there’s anything that they can do about it. They feel like that what happens is going to happen and there’s nothing much that any effort on their part is going to do.” However, some patients viewed the health providers as being too passive. “There’s never no follow-up on their part,” one said. “Checking with you, seeing what you’re doing. Giving you the latest as to what’s going, and all the situations you have.”
POINTING TOWARD SOLUTIONS
Because high amputation rates in rural regions stem from numerous causes, it will take a multifaceted response to improve things. “Educational barriers came up in more discussions than any other theme,” the authors note. “Improving provider knowledge and awareness of PAD and finding effective ways to teach patients at risk for PAD (such as patients with diabetes) about the disease and how smoking can worsen disease could be an effective approach to decreasing amputation disparities.” To address issues related to care access and coordination, the authors suggest funding for patient navigators and community health workers to help patients overcome economic logistical challenges to accessing care.
With respect to the physical distances that rural residents must overcome to reach medical centers, the authors propose developing a more robust telehealth network. Doing so might require infrastructure upgrades in rural regions, which often lack broadband internet facilities. The cultural factors that inhibit limb care may be the most difficult to address. The authors suggest developing community-engagement programs that draw on local residents to act as patient advocates and ambassadors. Finally, they observe, “mental health support for [this] patient population may be very important for improving outcomes.”
To download a copy of the paper, visit the Journal of Vascular Surgery.
