Symptoms, important quality of life to guide

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DALLAS, October 13, 2022 — For the approximately 8.5 million people in the United States living with peripheral artery discomfort (PAD – pronounced PAD), which is narrowed or clogged arteries in the legs, treatment decisions and criteria for success should be guided by their symptoms and self-reported quality of life, according to a new scientific statement from the American Heart Association published today in the Association’s flagship, peer-reviewed journal Traffic. A scientific statement from the American Heart Association is an expert analysis of current research and may inform future treatment guidelines.

The statement, “Advancing Quality of Care and Outcomes in Peripheral Arterial Disease Through Patient-Reported Health Assessment,” outlines how symptom-experienced management of PAD of a person can lead to more patient-centered care and outcomes, emphasizing valuable care, versus relying on clinical measures like the velocity of blood flow to the legs or the diameter of the arteries .

“The person living with peripheral arterial disease is the authority on the impact it has on their daily life. Our treatment must be grounded in their lived experiences and go beyond clinical measures of the quality of blood flow in the arteries,” said group vice president and senior author of the position paper Kim G. Smolderen, Ph. D., clinical psychologist and associate professor of medicine and psychiatry and co-director of the Vascular Medicine Outcomes Research Laboratory (VAMOS) at Yale University in New Haven, Connecticut. “We have spent years developing and validating standardized instruments to reliably and sensitively capture people’s experiences. We are now at a point where we can begin to integrate this information into real-world care, through pilot programs that can develop quality benchmarks for different phenotypes of PAD patients and the types of treatments they undergo. , as seen from their perspective.

Painful legs and other patient experiences

Although the majority of people living with peripheral arterial disease are over the age of 40, PAD also occurs in younger people. People with PAD have blockages in the arteries that supply blood to the legs and feet, often creating pain, cramping, or weakness when walking, causing them to stop and rest temporarily until until the pain goes away. Some people have no symptoms; however, many patients may remain pain-free solely because they limit their activities. Studies show that their health and functioning are also impacted. People with severely restricted blood flow to the legs (called critical limb ischemia) may experience pain even at rest, fail to heal when injured, or develop gangrene that can lead to amputation. PAD is also a risk factor for heart attack or stroke.

“All of these manifestations have a significant impact on people’s daily functioning and quality of life, with greater impact as the severity of the disease increases. Results are also affected by other health conditions common to people with PAD, such as type 2 diabetes, coronary heart disease, kidney dysfunction, or mental health issues like depression or stress-related disorders. “said Smolderen.

Patient-directed treatment

When the health care team is better aware and recognizes the burden of disease on quality of life, coordination of care for risk factors and patient concerns comes to the fore. The statement calls for improving and individualizing the care of people with clogged leg arteries by collecting feedback on their experience throughout treatment.

Patient-Reported Outcome Measures (PROMs) are systematic and validated ways to directly ask patients to assess the impact of their disease on their symptoms, functioning (physical, social, and emotional), and quality of life. Feedback through PROMs can more reliably and objectively assess the quality of care for people with PAD.

The main advantages of using PROMs include:

  • improve understanding of the patient’s experience with PAD;
  • improve self-management of the patient’s symptoms and medical needs;
  • standardize quality performance criteria for practices that care for people with PAD; and
  • provide relevant feedback to determine changes or treatment needs.

Engaging patients as experts in their own experiences draws more attention to quality of life issues or cardiovascular risk factors, which can help clinicians think beyond a particular intervention. This perspective can lead to conversations that change treatment or connect patients to other resources such as behavioral health services, wound care, or smoking cessation. Patient-centered care can also improve self-management and shared decision-making between patients and clinicians.

All of these benefits are possible as long as patient-reported outcome measures are assessed using tools that the patient understands, regardless of literacy level, language barriers, and cultural norms. It is also important that PROMs are conducted by experts who have the qualifications and understanding to administer the tools, interpret the results, and connect patients with additional resources. The statement includes sample PROMs to measure leg pain and function (including gait disturbance), PAD-specific health status, general health status, and depressive symptoms.

Performance measures to improve the quality of care

PROMs can also be an integral part of evaluating the quality of care programs provide to people with PAD. Spurred by the Centers for Medicare and Medicaid Services and the National Quality Forum, PROMs are increasingly being incorporated into definitions of what it means to provide high-quality, patient-centered clinical care, and PROM scores can have a direct impact on reimbursement. To evaluate programs, PROMs are translated into patient-reported outcome performance measures (PRO-PM).

Using PRO-PMs has the potential to:

  • provide measurable goals for programs to improve the quality of care;
  • encourage the development of health systems training and expertise to ethically administer, interpret, and use PRO-PMs to improve patient care;
  • reduce disparities in care and promote health equity; and
  • helping to create national standards for quality care.

“This roadmap highlights a paradigm shift that puts the patient experience first, which is a departure from the status quo. It is provocative to now place lived experience with illness at the forefront, engaging people with PAD to provide information that holds health systems and practitioners accountable for delivering high quality care, in addition to assess the safe and effective delivery of current evidence-based treatments,” Smolderen said.

This scientific statement was prepared by the volunteer writing group on behalf of the American Heart Association’s Council on Peripheral Vascular Disease and the Council on Lifestyle and Cardiometabolic Health. The writing group includes a patient advocate and experts in clinical psychology, outcome research, nursing, cardiology, vascular surgery and vascular medicine. It was important to ensure that this statement embodies the interdisciplinary nature of PAD care and the dedication to innovation in the vascular space, across all vascular specialties. This meant including experts with both research experience with PROs and clinical experience with PAD, as well as pioneers in the field of patient-reported outcomes for cardiovascular populations and with direct input from patient rights advocates.

Scientific statements from the American Heart Association promote greater awareness of cardiovascular disease and stroke and help facilitate informed healthcare decisions. Scientific statements describe what is currently known about a subject and areas that require further research. Although scientific statements inform guideline development, they do not make treatment recommendations. The American Heart Association guidelines provide the Association’s official clinical practice recommendations.

Co-authors are Chair Carole Decker, Ph.D., RN; Olamide Alabi, MD; Tracie C. Collins, MD, MPH, MS; Bernard P. Dennis, BA; Philip P. Goodney, MD; Carlos Mena-Hurtado, MD; and John A. Spertus, MD, MPH Author disclosures are listed in the manuscript.

The Association receives funds primarily from individuals. Foundations and corporations (including pharmaceutical companies, device manufacturers, and other businesses) also donate and fund Association-specific programs and events. The Association has strict policies to prevent these relationships from influencing scholarly content. Revenues of pharmaceutical and biotechnology companies, device manufacturers and health insurance providers, as well as the Association’s global financial information are available here.

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About the American Heart Association

The American Heart Association is an unrelenting force for a world of longer, healthier lives. We are committed to equitable health in all communities. Through collaboration with many organizations and millions of volunteers, we fund innovative research, advocate for public health and share vital resources. The Dallas-based organization has been a leading source of health information for nearly a century. Join us on heart.org, Facebook, Twitter or by calling 1-800-AHA-USA1.

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