What Do Patients Want?

Peripheral Artery Disease (PAD) patients wish their doctors would spend more time explaining their diagnosis and treatment options.

The Way To My Heart, a 501(c)(3) providing advocacy and support for PAD patients, conducted a poll, where patients were allowed to choose multiple responses, and that's the number one response to this question:

“What is it that your doctors are missing or don’t get about PAD?”

There were more than 200 responses to the poll. Fifty-eight percent wished their doctors would spend more time explaining their diagnosis and treatment options. Some of the respondents added comments. The most frequent comment was having to go online to find information about PAD because their healthcare providers aren't giving it to them.

What do these patients want to know?

• What exactly does it mean to have PAD?
• What is the root cause of PAD or why do I have it?
• How long can I live with PAD?
• What can I expect along my journey and how do we strategize around it to increase my life expectancy?
• Do you have a list of warning signs I should post on my wall at home?
• What should be my goals?
• What treatment options do you offer compared to what others offer?
• How do I manage the debilitating pain between appointments?

The second most common response in the poll is surprising. Frontline treatment for PAD is medical therapy and exercise therapy. Doctors tell patients to go home and walk, walk, walk to help build collateral vessels around the narrowing in the arteries. That natural bypass created by walking and pushing through some of the pain is the least invasive, least traumatizing, and most effective for long-term management of the disease. That is, if they will do it. Compliance is a huge problem. Patients tell me that if they have pain when they walk, they simply won’t walk.

In the poll, 49% said:

“Treat me sooner with surgical intervention using advanced endovascular techniques so I can maintain my walking with less pain”

This is controversial clinically, as depending on the study, outcomes of endovascular approaches vary from clinician to clinician. Some physicians have adopted more advanced lower trauma tools and techniques while other have not. Reasons why others have not include training choices, practice guidelines, tool access and selection, standard facility protocols that limit treatment options, and higher volume clinics that limit time spent per patient. All of those factors may impact endovascular approach success rates and effectiveness. That's why physicians delay intervention. Some wait for lifestyle limiting claudication or even tissue loss, which includes rest pain and non-healing ulcers. These delays will often make a simple lesion very complex or in some cases the disease advances with multiple lesions in multiple vessels that become a nightmare to treat. We have seen patients complaining they can only walk one block who are sent home with lifestyle modification and pharma as treatment only to return with gangrene months later. This disregard for a patient-centric approach to healthcare leads to unnecessary pain, suffering, and expense.

Part of the problem is the definition of terminology of the disease. There are guidelines and flow charts that are well established but yet the defining criteria for each stage of the disease is not clear. Many physicians don't understand that the patient is telling them there is a real problem and advanced diagnostic tools aren't used.

Patients say, that when done right, endovascular was preferred sooner rather than later. It was also more popular than bypass which received 2.5% of votes. Comments in the poll included the desire for physicians to use lower trauma techniques for angioplasty and the preference of not stenting unless necessary, such as with dissection, recoil, or subintimal angioplasty. The key point being that they believe that giving them a little extra flow that relieves even some pain could help them walk more and improve their quality of life and long-term prognosis. This point was stated multiple times in different ways and was the third highest response at 38%:

“I can’t walk, walk, walk, if in pain,”

Twenty-four percent urge doctors to listen and address the pain.

“Don’t dismiss my pain.”

Many felt physicians did not address their pain.

“My toes always feel like they’re on fire and you brush it off.” 

The comments around pain were interesting. One patient commented, “I wish doctors would wear a tourniquet around their leg for 24 hours. and try to walk and sleep with it, to understand and respect what life is like for us on a daily basis. Maybe then they will intervene sooner.” Another said, “I don’t need a lot of extra flow to walk more, just a little extra if they lightly use a balloon, maybe?” Again, they're asking for doctors to treat earlier versus waiting for their arteries to be totally blocked.

Fifteen-percent ask doctors to:

“Please listen to me even though I am active and in good health.”

Lifestyle limiting claudication means something different to each patient. That should be considered when determining walking goals and timing of an intervention. Some of the more fit patients have a greater pain tolerance and are willing to push themselves more. Since they’re pushing themselves, doctors don’t see a need to assist surgically to minimize the pain to push through to walk farther.

One patient said doctors really need to consider the domino effect of pushing through PAD pain. For him, he says he was so determined to achieve ¾ of a mile that he ended up clenching his teeth due to the stress and cracked his tooth, resulting in even more pain elsewhere and a surgical procedure for a crown.

Another patient has pushed herself walking to the point where collaterals have kept her going for a decade. It wasn't a pleasant journey. Despite growing collaterals, she explains that doctors don’t understand that the pain continues and it’s a constant battle unless they intervene sooner to help in the process. They wouldn't even consider it for her five years into her PAD journey. She says they would ignore her complaints that, even though she would push further and further, it was getting tougher and more painful.

"I feel like doctors punish those who have a higher pain tolerance or can't afford to give in to the pain," she explains. "I suffered every minute of that push. But I had to do it because I had to work. If doctors can do something to reduce pain to help us increase walking, they should do it, but do it right, and with newer techniques."

Even worse, is after she pushed through all of that pain for more than a decade and growing collaterals, her collateral growth could not keep up with the disease. So what started as a small focal lesion in the superficial femoral artery (SFA) ten years ago, has now expanded to become a long, calcified, chronic total occlusion (CTO) from the ostium of the SFA through the popliteal artery, and below the knee. In addition, she now only has one vessel run-off to the foot. Despite walk, walk, walking, she now gets barely four hours of sleep due to rest pain and has to hang her feet off the side of the bed all night. Endovascular intervention, which had been an option initially, is not an option anymore. Her doctors must perform an invasive bypass, which is costly in both money and time because she's the sole breadwinner in her family and has to take off an extensive period from work for a 6-8 week recovery. She says, " My doctors told me that if I was older they would've treated me sooner but because I was pushing through the pain, I wasn't a priority." She adds, "If only my doctors would've acted sooner, I would've never had to spend the last ten years suffering, only to find out it wasn't worth my effort because now I have fewer available options."

Patients such as the one above are suffering due to delayed treatment. They feel as though if physicians listened more and respected them when they stood up for their health, they would have a true partner in this PAD journey. My favorite addition to the poll was by a patient who went through seven doctors before finding a treatment that has been long-lasting. She said it was really easy to cross doctors off her list because they got defensive with her well-informed questions intended to prompt details on treatment options, including which tools and techniques they use to revascularize blockages. So, she added this statement:

“Don’t get offended because I ask many questions. Know that it’s my body and I deserve to be answered honestly.”

In comments she also said that the doctors provide limited information, not allowing her to make informed choices. “Doctors will only tell you that they can do it, but they don’t seem to like to tell you how, allowing you to better assess if their approach is right for you. Even more, is they say they have the best options which I have discovered isn’t always true.”

Others aligned with this notion indicating they want doctors to be honest about not just the treatment options they offer, but what’s also available elsewhere. Two patients added these line-items which were supported by more than 20 others:

“Are there any more options at other hospitals or centers?”

“It’s not fair that you tell me I have no option simply because YOU can’t save my leg.”

Patients indicate that they're tired of doctors telling them they have no option. Nearly 200,000 needless amputations occur annually because of that. Patients say they have a right to know that different doctors treat blocked arteries using different tools and techniques. Each tool and technique is right for a certain subset of patients. Some are best treated by a vascular surgeon, others by an interventional radiologist, and others by an interventional cardiologist. Some may even just need wound care or sugar management to reduce symptoms and improve their quality of life. Some may be best for a hospital, others are a better fit for an Office-Based Lab.

There's no one-size-fits-all when it comes to PAD.

Instead of forcing all patients into one box, physicians should treat each as an individual, and present treatment options accordingly. That includes options in their toolbox and that of others. What do doctors have to lose by being honest with available options, even elsewhere? It's not as if there aren't enough PAD patients to go around. The quality clinics are bursting at the seems. And this patient-base is growing because of diabetes, COVID, and the aging population. Education is also improving for primary care physicians, endocrinologists, podiatrists, and other clinicians to properly diagnose PAD. That will lead to additional patients needing vascular care.

One of the ways to make a big impact is to reduce the number of patients. Patients want the healthcare system to provide early support for lifestyle modifications. Based on the poll, they want more help with smoking cessation, diet, and exercise, including referrals to rehab programs. They want counseling for the psychological impact of this disease and make referrals accordingly. They ask that physicians be forthcoming on the potential for it and find them help to deal with the depression they say goes hand-in-hand with PAD.

“Refer me to a psychologist because of the impact of my pain on mental health.”

Depression is rampant among Peripheral Artery Disease patients. Addressing their concerns listed in the poll could help alleviate the key triggers which include pain and anxiety. All patients are asking for is that doctors take these desires seriously to help them improve their quality of life. They know there's no cure. But they hope the information provided in this poll will help facilitate a more productive and satisfying conversation along with a more effective long-term treatment and disease management strategy. They also hope it will lead to policy changes that dictate their care so doctors are inspired to seek advanced training and have greater freedom to do what's right for each individual case, including refer out patients for special limb saving skills.

It’s time for doctors to…

• Put an individual patient’s needs at the forefront of all decision-making.
• Listen and address the patient’s symptoms and instead of brushing them off.
• Revisit standard protocols that limit diagnosis and treatment options.
• Offer endovascular options sooner if preferred by the patient who believes they will walk more with less pain, and use less trauma causing techniques such as "low and slow angioplasty" and try to "leave nothing behind."
• Not only assess their own skills and be honest with themselves and their patient about them, but to also be upfront with them about the potential for other options elsewhere.
• Be a life-long learner for the sake of their patients and maintain advanced training in the life & limb saving skills necessary to put a stop to needless amputation.
• Set their facility bias aside and recognize that great outcomes as well as poor outcomes can equally come from both hospitals AND office-based labs.

Patients desire to have faith in doctors and our entire healthcare system. Let's not let them down. Let's rise up together and get ahead of the pain to improve the quality of life for patients around the world.

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