While it is recognized that these individuals are more than patients, the authors are simply attempting to differentiate this group from healthcare providers and researchers. The ultimate goal of this work is to improve the care of PAD patients by investigating the gap between evidence-based recommendations and the preferences and values of patients. By identifying the perceived inadequacies of current treatment methods, this synthesis will explore what aspects of PAD care are most important to patients. Collecting and highlighting the perspectives and experiences of PAD patients is the first step in fighting the growing public health problem that is Peripheral Arterial Disease.
This idea draws on patient-centered care models. These models propose an integrated care approach that incorporates the patients’ views and preferences into evidence-based care decision-making. With the theme of patient-centered care in mind, this synthesis aims to study Peripheral Artery Disease (PAD) patients and their experiences with their disease and its management. PAD is a chronic vascular condition affecting millions of Americans (often those with co-morbid heart disease or diabetes) and is associated with significant morbidity and mortality. PAD patients suffer high rates of functional impairment and experience a marked reduction in their quality of life. Despite this, there remains a lack of public and patient awareness regarding PAD. Often, PAD patients consider their condition as part of the aging process and simply an annoyance. This attitude is reflected by low rates of guideline-based medical therapy and disproportionately low levels of federal funding available for PAD-specific research.
Understanding Peripheral Arterial Disease
Peripheral arterial disease occurs when there is a build-up of plaque in the arteries that carry blood to the head, organs, and limbs. This essentially means that the arteries become blocked, restricting or cutting off blood flow to the affected body part. So if you have blockages in the arteries in your legs, you will feel pain upon walking, as your leg muscles are unable to get enough oxygen when they are working hard. This pain is known as intermittent claudication. If the blockages become severe, there may not be enough oxygen for the legs, even when they are resting. This can lead to numbness and a feeling of cold in the legs, as well as sores on the toes or feet. If the blood flow is not restored, there is a risk of infection and ultimately gangrene in the affected limb. In extreme cases, where there is a sudden complete blockage of the artery, there may be pain at rest and a loss of pulses in the affected limb, indicating that there is tissue damage and an immediate threat to the limb. This is known as critical limb ischemia and requires emergency treatment. Peripheral arterial disease also increases the risk of stroke and heart attack, as atherosclerosis is a generalized disease and a build-up of plaque in the arteries in the head or heart can have serious consequences. Regular check-ups to monitor the disease are important in order to prevent these problems.
Risk factors
High C-reactive protein levels, an indicator of systemic inflammation, have been associated with an increased prevalence and incidence of PAD as well as symptomatic severity of the disease. Although causation cannot be determined from these observational studies, a greater understanding of these less traditional risk factors may lead to new strategies in primary prevention and treatment of PAD.
Similar to coronary heart disease, PAD has a multifactorial etiology with some less traditional risk factors contributing to its pathogenesis. Chronic kidney disease is an independent risk factor for the development of PAD with a risk estimated to be 1.5 to two times greater than patients without kidney disease. An association between hyperhomocysteinemia and PAD has been reported in numerous studies. A recent systematic review and meta-analysis showed that elevated homocysteine levels present a moderate independent risk factor for the occurrence of PAD. Low vitamin B12 and folate levels are associated with hyperhomocysteinemia, but the exact role of these vitamins in the disease process is not clear.
Abdominal obesity is often associated with atherogenic risk factors and causes a high rate of atherosclerosis in the aorta and lower extremity arterial system. Although the exact mechanism by which diabetes leads to atherosclerotic vascular disease is not well understood, it is clear that diabetes is a strong independent risk factor for PAD. A recent systematic review and meta-analysis showed that patients with diabetes had a greater than two-fold increased risk of PAD compared to non-diabetic individuals.
High blood pressure is also a major risk factor for the development of PAD. The prevalence of PAD is two to six times higher in hypertensive patients compared to normotensive individuals, and hypertension is associated with an increase in the severity of PAD with a higher risk of claudication, functional decline, and required intervention. High blood pressure causes damage to the intima of large and medium-sized arteries predisposing them to atherosclerotic lesions.
The protective effects of smoking cessation are well documented in other cardiovascular diseases and are seen in patients with PAD. It has been estimated that 46% of the decline in deaths from PAD in the USA over a 10-year period was due to the reduction in smoking. A high prevalence of smoking in the developing world is a major reason why PAD is five times more common in these countries.
The INTERHEART study has shown that the most important risk factors for myocardial infarction, an atherosclerotic disease of the coronary arteries, are abnormal lipids, smoking, hypertension (with abdominal obesity and psychosocial factors being important on a population level). Abnormal lipids, smoking, and hypertension are also very important in the development of PAD. Abnormal lipids predispose an individual to atherosclerosis in multiple vascular beds. A recent meta-analysis concluded that the association between triglycerides and atherosclerotic cardiovascular disease is significant and independent. Hypercholesterolemia has been associated with an increased risk of PAD in a dose-related manner.
Research on the risk factors for PAD has largely been associative, based on findings from epidemiological studies. However, our understanding of how certain risk factors actually lead to the development of PAD is still poor. The well-established risk factors for PAD are the same as for other forms of atherosclerotic vascular disease as listed in Table I. Although comprehensive, this list contains risk factors that are themselves the result of other risk factors, for example diabetes and dyslipidaemia.
Symptoms and diagnosis
There are three categories of leg pain that may occur in patients with PAD. The first type is called intermittent claudication. This is a cramping pain or fatigue in the muscles of the legs with exercise, such as walking, that is relieved by a short period of rest. This occurs because the muscles are not getting enough oxygen when they are working at an increased rate. If the oxygen supply is not sufficient to meet the oxygen demand in the muscles, the muscles change to a different form of metabolism to produce energy. This results in the build-up of lactic acid in the muscles, which produces the pain. The symptom is called intermittent because it comes and goes with exercise and rest. This type of leg pain is highly predictive of PAD, although not all individuals with PAD have intermittent claudication. In fact, up to 40% of patients with PAD may have no leg pain.
Treatment options
Antiplatelet therapy with aspirin is recommended for all PAD patients, with the exception of those with a history of cerebral hemorrhage. Clopidogrel appears to be no more effective than aspirin for prevention of cardiovascular events in PAD patients, but is an alternative for those who cannot tolerate aspirin. The use of thienopyridines alone in patients without a history of vascular intervention is not widely recommended given the lack of data in this particular population. The combination of aspirin and clopidogrel has been shown to decrease cardiovascular event rates in patients with CAD and cerebrovascular disease, and is often used in PAD patients, however there are no specific studies looking at this particular combination in the absence of other atherosclerotic disease. High dose statin therapy has been shown to decrease cardiovascular event rates in PAD. Of note, PAD patients often do not receive the same aggressive medical therapy as those with CAD or cerebral vascular disease.
As mentioned in the article, the current gold standard for PAD treatment is exercise therapy and cilostazol. Effective treatment is not only dependent on pharmacotherapy, but also lifestyle modifications including smoking cessation, exercise, and dietary changes. Hypertension and hyperlipidemia should be treated aggressively in patients with PAD to decrease cardiovascular event rates, although there are no specific studies looking at treatment of these co-morbidities and their impact on limb outcomes in PAD.
Importance of Patient Perspectives in Care
Patients with a chronic disease such as PAD often face numerous treatment decisions that are preference-sensitive and involve weighing benefits against procedural inconveniences and risks. It is an important aspect of care to make decisions, including no further medical treatment, that are informed by the best scientific evidence available and also reflect what is truly important to the patient. Shared decision-making is a means of accomplishing this, where clinicians and patients work together to make decisions and select tests and treatments, based on evidence that balances risks and expected outcomes with the patient’s informed preferences. An important part of shared decision-making is decision support, where patients are educated about the options, including the benefits and risks of each, and prompted to consider their personal values as they make a decision. This requires time and collaboration between the clinician and patient, but studies have shown that it results in decisions that are more consistent with the informed preferences of patients. It improves the health outcomes and satisfaction and often reduces the burden of care on the patient and family. All of these are important considerations in a chronic disease such as PAD where patients may face difficult treatment decisions with uncertain long-term benefits on functional capacity and quality of life.
Patient-centered approach
This approach is precisely what we are promoting in considering the patients with PAD and incorporating their perspective into our evidence review and recommendation process.
Aspects of health care that were examined included prevention and treatment strategies, diagnostic tests and procedures, and the patient’s and family’s experience of acute events and chronic disease. The patient-centered approach has important implications for clarifying nomenclature and criteria to be used in determining appropriate evidenced-based treatment strategies for which patient preferences would be sought and considered. These issues may be revisited as we further expand our evidence base regarding complex interventions.
The Institute of Medicine has articulated the essential nature of understanding and incorporating the patient’s perspective into all that we do with a view to increasing the relevance of our efforts to the patient and achieving the best outcomes. The increasing interest in patient-centered care has led a joint working group of the American College of Cardiology (ACC) and the American Heart Association (AHA) to provide a comparison on how the traditional but broad approach of CVD management contrasts with the patient-centered care approach. The emphasis on the patient perspective is fundamental to the conduct of clinical practice, medical education, and clinical research.
It has been noted that the term ‘patient-centered’ has been overused and sometimes misunderstood. The doubt arises that if we do take the patient’s own perspective to be very important, then what is the difference? The patient-centered care approach involves a complete and comprehensive understanding of the patient’s medical issues within the context of his or her own life circumstances and cultural issues. It is only through this understanding that effective care plans and the outcomes desired by the patients can be achieved.
Enhancing patient engagement
This can be translated to patients’ lifestyle changes and adherence to their medication. This phase is what healthcare providers seek when attempts are made to enable patients to self-medicate or surgically fix their conditions. This direction of care taken by providers to increase patient engagement, especially towards behavioral engagement, has shown to greatly improve patient outcomes. This is proven in a self-controlled trial, which integrated a behavioral intervention for depression with standard medical treatment for PAD. The intervention had the goal of improving patient adherence to treatment and was shown to greatly improve depression outcomes and PAD symptoms.
There are three phases in which patient engagement takes place. The first involvement of the patient in their own care is known as “emotional engagement”. This is the level at which patients declare a desire to help themselves. This phase is the most critical because patients who do not have this mindset will more than likely default to their old lifestyle and medication regimen. Step two is the “rational engagement” of patients in their own care. In this phase, a patient will seek out medical information and the means to act on their concerns. This is often done by patients speaking to healthcare professionals about their condition or seeking others who have similar experiences in self-help groups. The last phase is “behavioral engagement”.
The term “patient engagement” refers to an intentional action to involve patients in their own care. This concept redirects medical care from the traditional approach where a doctor prescribes treatment to a patient (whatever the doctor’s opinion of it may be), to actively involving the patient in their treatment by providing them with the means to do so. This idea has been shown to improve a patient’s adherence to prescribed medication and the lifestyle advice they receive, which is ultimately the goal of the patient and healthcare provider.
Addressing patient concerns and preferences
Research conducted in a programme to identify what patients regarded as important aspects of their care in knee and hip osteoarthritis found some interesting results which can be used to better understand and address patient concerns. The patients in question felt their care priorities should be identified and acted on, with relevant information being readily available to them so they could participate in decisions about their own care and treatment. They wanted to be able to discuss treatment options with their provider and finally, they desired coordination of treatment improvements in their interaction with the health care system. This research provides useful information, providing us with specific areas of patient care delivery that need to be better addressed. Using this as a base, it would be possible for a reliable and valid questionnaire to be developed for PAD patients in various healthcare settings, which could determine the most important aspects of care from each individual patient. This would be the first crucial step in a patient-centered care approach and is highly important as each individual’s health problem is different with many differing circumstances.
Many a times during medical consultation, the most pressing patient concerns are skirted aside and not given the attention which the patient needs, let alone the physician actually understanding what the concern is coming from. In PAD, the concerns can range from broad questions in terms of overall prognosis and quality of life to those looking more at specifics in the expressed treatments. Therefore, in order to fully meet the expectations patients have of their care, we as clinicians need to better understand what patients’ concerns actually are. Knowledge of this can help us better direct treatment and enable us to tailor given information to their treatment every step of the way.
Shared decision-making
Informed Decision Making (IMD) is an output of SDM and occurs when patients feel they have enough information on the options available to come to a decision and when patients perceive that the decision was their own. IMD has been related to improved adherence and also to decreased decisional regret. Regret is a negative emotion that is experienced if people realize that their decision had more potential benefit risk than they had realized when the decision was made. Decisional regret is a negative association as it can affect mental well-being and is correlated with decreased health status.
Shared decision-making (SDM) is a collaborative process that allows patients and clinicians to make healthcare decisions together, taking into account the best available scientific evidence as well as the patients’ values, goals, and concerns. Decision aids (DAs) are used to help patients understand their options and the evidence supporting each option. DAs also help patients clarify and communicate the personal value they associate with different potential outcomes, thus preparing them for the next step in SDM, which is to discuss their options with the clinician. Ideally, the clinician will support the patient to make a decision that is informed, in line with the patient’s values, and that is implemented.
Strategies for Integrating Patient Perspectives
It has been documented that in these cases, the decision is usually reflective of a physician’s preference for less invasive treatment, with the intention to preserve functional status, rather than the patient’s desire to have the treatment that would allow them to walk greater distances, even if these decisions were based on assumptions of perceived patient priority. This particularly applies to decisions concerning revascularization.
Implications from the perspective of a patient should dictate not only the course of discussions but also how information is presented and what it represents. Essentially, when physicians mention treatment decisions being made on behalf of the patient without fully consulting or explaining this to the patient, it is often inferred that the decision is based around not what the patient wants, but what the physician deems best for the patient’s welfare.
Due to the chronic nature of PAD, continuing care with a particular provider is often important to the patient. However, inadequate communication during hospitalizations can sometimes lead to drastic treatment changes and, in the worst-case scenarios, amputations without the patient being fully informed.
In a detailed study of patient perspectives on PAD, many patients felt that the physicians did not truly understand the severity of PAD, due to a lack of discussion on the serious implications of the disease and no explanation of long-term progression. There were reports of patients being told to look up PAD on the internet. This led many to feel that their physician did not have enough time to spend on them, or that the physician had given up on their condition. This, to the patient, often translates to a “conveyor belt” system of healthcare. Although it may be more time-efficient, it often provides a lower quality of care and can leave the patient feeling isolated from their provider.
A patient’s perspective is deeply rooted in their personal circumstances, and these are often not fully disclosed by patients due to the assumption by the patient that the physician does not want to hear such things, or that the disclosing of such information may be too time-consuming.
Effective communication is pivotal to understanding the perspective and priorities of patients. Such communication is needed for uncovering patient concerns, rationale for treatment preferences, and observation of the patient’s experience. This understanding forms the basis of individualized care that is so often aspired to in the current healthcare systems.
Effective communication
The essence of effective communication begins with the very first patient contact. Developing trust and rapport are essential and can be facilitated by expressing empathy and care. Kleinman describes a technique known as “eliciting the patient’s explanatory model” which can yield tremendous diagnostic and therapeutic information. In this technique, the clinician inquires about what the patient thinks is the problem, and provides the clinician’s understanding of the problem, before any decisions are made. In doing this, the clinician can discover common ground or if there is disagreement as to the nature of the illness. The explanation phase follows the clinician’s request to tell the patient their story and consists of stopping intermittently to ask for more information. The final phase is instructions: the clinician gives the patient a mutually agreed-upon explanation of the problem and the treatment plan. Use clear and simple, everyday language and define any medical terms. Research shows that patients are often passive, due to feeling intimidated and lacking self-esteem and understanding. They will nod in agreement but not possess full understanding. Open-ended questioning allows patients to express concerns, inform the physician of their perspective, and be involved in decision-making. Beneath the umbrella of patient involvement lies shared decision-making. This approach identifies patient preferences and decisional needs, discusses the best evidence, and provides adequate information regarding potential benefits, risks, and uncertainties of available options. This approach truly honors patient autonomy.
Patient education and empowerment
Many patients with lower extremity PVD have little understanding of the relevance of their symptoms to their underlying atherosclerotic disease. In particular, symptoms of intermittent claudication are frequently misinterpreted as being due to arthritis or to normal aging. Information about the natural history of the disease can help to offset fears that symptoms represent a more serious illness, and can also motivate patients to undertake risk factor modification and exercise therapy. Specific knowledge of how intermittent claudication is related to functional impairment can enhance a patient’s willingness to undertake rehabilitative exercise therapy.
Patient education can be defined as any set of planned educational activities designed to improve patients’ health behaviors and health status. Patient education is a fundamental element of care for patients with PVD for two reasons: firstly, the improvements in patients’ health which occur following patient education are frequently the most effective treatments available for the disease. Secondly, it is widely recognized that self-management strategies to improve health are more effective when patients have a thorough understanding of their condition and its implications. Patient education has been shown to be helpful in most patients with PVD, in that patients with PVD usually have coexisting diseases for which they are unaware of effective preventive measures or treatments.
Collaborative care planning
A randomized controlled trial conducted by the Department of General Practice and Primary Health Care at the University of Auckland has shown that training in patient-centered communication can improve practitioners’ involvement of patients in decision making during a consultation. This training had been in response to practitioners expressing difficulty with what this might look like in a consultation. Eliciting the patient’s perspective aims to enhance patient understanding and involvement in their own care, often resulting in better adherence to treatment.
An aspect of collaborative care planning is developing a partnership between practitioners and patients that allows for the exchange of information and informed decision making. Here both the clinician and the patient bring their expertise, with the clinician bringing clinical expertise and the patient their expertise of living with the condition. This partnership is characterized by the clinician seeking to elicit the patient’s perspective, where they view the problem, its impact, and what the treatment or advice is seeking to achieve. This requires the clinician to listen and share information with the patient. This can be difficult for practitioners who have been found to overestimate the amount they involve patients in decision-making and the degree to which patients wish to be involved.
In collaborative care planning, the clinician and the patient share information and make decisions together. This process is fundamental to implementing effective patient-centered care as it establishes a partnership and a trusting relationship between the patient and the team. The National Institute for Clinical Excellence (NICE) advocates collaborative care based on the best available evidence on the effects of different ways of involving patients in decision making, where clinicians facilitate and support patients in making informed decisions. This has been shown to enhance patient informed decision making and improves patient satisfaction with the consultation.
Patient support and resources
The only non-web resource noted as being accessible to all participants was patient support group provision. The existing groups known to the researcher were not attended by any participants, although the potential of these groups for giving support was seen as quite high. Telephone support through modern technology was not mentioned by any participant, despite it being a potential tool using modern mobile phones. Step IV in translating PAD and preventing re-attacks so effectively that today’s patients feel they are no longer threatened by PAD. This step merges with the final stage of the research into one puppet message that PAD can be prevented and need not affect quality of life.
Although the interviews conducted in this study took place in the UK, the internet/email came out in interviews as a resource that had potential in giving support to the participants. It was seen as a mode of support that gave time and scope for consideration in order to respond. The informational websites were described as being too impersonal, not dealing with the specifics of PAD, and too American in content.
