What is Guidelines-based Care?
Guidelines-based care is an often-used term that refers to healthcare providers making decisions about treatment for a disease based on established strategies that summarize the best available evidence on how to provide optimal care. Guidelines are vital to provide easy access to all healthcare providers to current medical knowledge, weigh the benefits and harms of diagnostic procedures and treatments and provide specific recommendations based on the information available. They are also ever-changing, as new science emerges on what does and doesn’t work in the best interests of the patient.
The more a healthcare provider sees patients with any disease, such as pulmonary hypertension (PH), the more familiar they become with the guidelines specific to that disease. Primary care providers see a broad spectrum of patients and must keep up to date with ever-changing guidelines that can be hundreds of pages per disease state. As such, summary guidance from experts provides primary care providers with a quick overview of key learnings so they can work with their patient to best diagnose and treat their disease and know when to refer their patient to a specialist.
In April 2024, the American Lung Association held its first in-person Pulmonary Hypertension Roundtable Meeting to address some of the nationwide challenges that slow down early diagnosis and treatment. The meeting was attended by a panel of experts in the field of pulmonary hypertension to discuss the latest updates to European guidelines for pulmonary hypertension and how those guidelines can support care of patients in the United States. Following the meeting, guidance to the guidelines was created for healthcare providers to summarize currently available guidelines.
What is Pulmonary Hypertension and Why Were Guidelines Needed?
Pulmonary hypertension means the walls of the lung arteries have become stiff, damaged and narrow. Blood flow becomes more difficult leading to rising blood pressure in the lungs and the right side of the heart must work harder to pump oxygenated blood throughout the body. This added stress to the heart can lead to heart failure. In most cases, pulmonary hypertension cannot be cured, but proper treatment can improve symptoms and slow the disease’s progression.
Oftentimes patients living with pulmonary hypertension were diagnosed long after their symptoms began due to a similarity of symptoms to more common lung diseases like asthma and COPD. The most common symptoms of PH include shortness of breath, fatigue, chest pain, dizziness and fainting, heart palpitations and edema.
What is it Like Living with Pulmonary Hypertension?
Lindsay was 23 years old when diagnosed with pulmonary arterial hypertension (PAH) and shared her story of learning how to read and listen to her body so she could best advocate for her care. PAH is classified by the World Health Organization (WHO) as Group 1 and occurs when the arteries in your lung become thickened and narrow, which blocks blood flow resulting in increased blood pressure in the lungs that puts stress on the right side of the heart. Lindsay is a huge proponent of self-advocating for open and ongoing communication with a specialist, seeking support from others living with the disease and following medication treatments exactly as prescribed.
Delores was diagnosed with another type of pulmonary hypertension, chronic thromboembolic pulmonary hypertension (CTEPH). This form of pulmonary hypertension is classified by the WHO as Group 4 and occurs when blood vessels in the lung have been blocked by a clot for an extended period. Delores shared her experience of going back and forth between lung and heart doctors to figure out what was going on due to her symptoms being like many other cardiopulmonary diseases. Finally, a specialist was able to determine that both her lungs were filled with blood clots and treatment began to ease her symptoms and stop the disease from progressing. Delores wants more people to know about CTEPH, “Even doctors might think you have something else because the symptoms are similar to other health issues. Because CTEPH is a rare disease, many people don’t know about it.”
What Resources are Available for Patients Living with Pulmonary Hypertension?
If you have been newly diagnosed with pulmonary hypertension, no matter what type it may be, learn all you can about the disease, treatment options, support groups and how to manage your PH. Your healthcare provider can help you understand your disease and refer you to a specialist or other resources. They can explain if your treatment follows guidelines-based care, and if it differs, why that makes sense in your situation. If the cost of treatment is a burden for you and your family, speak with your healthcare provider about your concerns and available options.
You can also contact the Lung HelpLine at 1-800-LUNGUSA to speak with medical professionals who can help guide you to available resources.
Support for this program was provided in part by Merck
Blog last updated: December 4, 2024
