Out of the 37 million Americans with diabetes, 34% of them will develop a diabetic foot ulcer (DFU) in their lifetime, a leading cause of lower extremity amputation. Previous research on DFU care has primarily focused on clinical interventions and healthcare system challenges, with far less attention given to patient experiences. While these clinical advancements are critical, they only tell part of the story. With limited qualitative data from DFU patients, there are gaps in understanding patient perspectives on care barriers. Patient perspectives are critical to identifying barriers to care and shaping more effective, patient-centered strategies for chronic conditions like DFUs.
A recent qualitative study published in the International Wound Journal set out to better understand that perspective through semi-structured interviews with 15 patients with a history of DFU and/or amputation. The interviews began with a simple but powerful question: What advice would you give to providers and to other patients having experienced a diabetic foot ulcer yourself? The responses painted a clear picture of where care is falling short and where meaningful improvement is possible.
The Gap Between Diagnosis and Understanding
One of the most prominent themes from the study was how often patients struggled to fully understand terminology used in healthcare settings. Many felt that information was not always explained in a way they could easily understand. For example, some patients described their wounds using terms like “burn,” “injury,” or “cut,” and did not understand what the word “ulcer” meant. Even patients who had been living with diabetes for years reported gaps in knowledge, making it harder to make informed decisions about their care. And when understanding is limited, so is the ability to act early.
Patients also made it clear that providers should not assume a diagnosis comes with understanding. As one participant shared, ‘My personal experience is that because you’re diabetic, they think you know everything about diabetes. They assume that you should know that there’s foot care involved, eye care involved, that there’s a certain diet that you should follow.’
To close this gap, patients emphasized the need for more accessible and consistent education, including:
- Clear, simple explanations of DFU risks and complications
- Educational materials in plain language
- Visual resources, including videos and demonstrations
- Accessible tools such as pamphlets, websites, and educational content
As one participant put it, “You can never be overeducated in any of the diseases.”
The Cost of Delayed Care
Another consistent message from patients was the lack of consistent and proactive preventive care. Patients reported that foot checks and screenings were not always performed regularly and were often dependent on the patient bringing up concerns first. This created uncertainty and anxiety around whether wounds were healing properly or worsening over time. In some cases, patients recalled being told their condition was improving, only to experience rapid deterioration shortly after.
Many expressed a desire for more frequent screenings and follow ups, ongoing monitoring of wound progression, and greater reassurance that complications are being caught early. In many care models today, intervention is still driven by visible symptoms, rather than by underlying risk. However, by the time a complication becomes obvious, the window for prevention may already be closing.
If Patients Can’t Follow It, It Doesn’t Work
Even when care plans were provided, patients voiced that they often found them difficult to understand or act on. Written materials were described as complex and overwhelming, with unclear guidance on things like medication timing and wound care steps. Because this makes it harder for patients to follow through consistently, offering simple and direct communication, reinforced over time, improves how information is delivered.
Patients called for:
- Simpler, more digestible instructions
- In-person demonstrations when possible
- Clear, step by step guidance
When instructions are not clear, adherence suffers, and the risk of complications increases. When patients leave a visit unsure of what to do next, even the most well-designed care plan becomes difficult to carry out. Small gaps in understanding can lead to missed medications, improper wound care, or delayed action when new symptoms appear. Over time, these small breakdowns can compound into more serious complications and costly problems..
When Patients Feel Like Just Another Case
Beyond clinical care, patients consistently highlighted the importance of communication and trust. Many felt that care was not always personalized and that their concerns were not fully heard. Some described feeling as though they were treated the same as every other patient, rather than as individuals with unique experiences and needs. They expressed a desire for more personalized, age-appropriate care that reflects their daily lives and specific challenges.
Improving communication was seen as a high priority. Patients want providers who take the time to listen, acknowledge their concerns, and engage in more meaningful, two way conversations about their care.
They emphasized the need for:
- Stronger, more consistent communication
- Care that feels personalized rather than one size fits all
- Being heard and taken seriously when raising concerns
Ultimately, patients made it clear that trust is not separate from clinical care, it is a critical part of it. When patients feel heard and understood, they are more likely to engage in their care, follow recommendations, and achieve better outcomes.
Advice Patients Give Each Other
Patients also shared practical advice for others managing DFUs, reinforcing the importance of daily habits and early action. Much of their advice centered on lifestyle changes, even while acknowledging how difficult those changes can be to maintain. Patients spoke about the importance of improving diet, staying active through regular movement like walking, and consistently wearing proper footwear. They also emphasized the need to protect their feet at all times and to regularly check both their feet and their shoes, noting how easily small issues can go unnoticed.
Self management was another major focus. Patients stressed the importance of regularly monitoring blood glucose, staying consistent with medications, and performing daily foot checks. Many highlighted the need to pay closer attention to early warning signs, such as redness or swelling, which are often easy to overlook but can signal the beginning of a more serious issue.
When it comes to seeking care, patients are clear and direct: do not wait. Even minor concerns like sores or blisters should be addressed immediately. Delaying care, they explained, can quickly lead to complications that are much harder to treat. Routine check-ups also play a critical role, helping to catch issues early and prevent progression.
Aligning Care with What Patients Actually Need
This study highlights a clear opportunity to improve DFU care by better aligning clinical practices with patient needs. Patients are not asking for entirely new solutions, they are asking for care that is easier to understand, easier to follow, and delivered earlier. They want more consistent preventive care, clearer education, simpler instructions, and more personalized, responsive interactions with their providers.
These changes may seem straightforward, but incorporating patient perspectives can improve understanding of DFU onset, care, and outcomes. And in DFU care, that can be the difference between early intervention and more serious outcomes like amputation.
