Maybe you spent months going from doctor to doctor, completing test after test, trying to find out what is wrong with your health. Just having a diagnosis can be a relief. But now that you know you have pulmonary fibrosis you may wonder “should I get a second opinion?” Certainly, you ask yourself “how do I make sure that I am getting the best treatment?” In this post, I’ll talk about which doctors and specialists might be on your healthcare team. And I’ll talk about the Care Center Networks, a list of over 70 medical centers in the US that meet a set of standard practices in treating pulmonary fibrosis.
Your primary care physician is only the beginning
From annual exams and routine vaccinations to treatments for minor illnesses, Americans rely on a primary care physician for most of their medical care. No matter how much you like and trust your primary care physician, pulmonary fibrosis requires specialized medical care. Your primary care doctor will likely refer you to a pulmonologist, a specialist in lung disease. You will continue still see your primary care physician for routine care. But your healthcare team is most likely about to grow larger.
Why you need an experienced healthcare team
You won’t be surprised to hear that Interstitial Lung Disease (ILD) and pulmonary fibrosis are rare and complex. In both diagnosis and treatment, your medical team’s experience counts a lot. Having an accurate diagnosis helps ensure that you get the right medication and treatment. Most primary care physicians have had very little experience in the area of ILD and pulmonary fibrosis (PF). A primary care physician who has worked many years may have only seen a handful of patients with pulmonary fibrosis. It’s discouraging to learn that many patients take months to get an accurate diagnosis.
The symptoms that may bring you to the doctor’s office, dry cough, fatigue, shortness of breath, and weight loss, are symptomatic of many different diseases. The types of interstitial lung disease are difficult to diagnose, even for specialists, because there are more than 200 diseases in the class of ILDs. It can often take months and a series of tests by different specialists for an accurate, complete diagnosis. In some cases, the underlying cause is never known.
Treatments for ILD and PF are changing rapidly. Antifibrotic drugs have only been available in the US since 2014. New treatments are being researched, developed, and tested constantly in this rapidly evolving area of medicine. Doctors who have a less specialized practice work steadily to keep up with new developments. To complicate matters even further, there are a number of diseases that often accompany pulmonary fibrosis (rheumatoid arthritis, Sjögren’s syndrome, sarcoidosis) that complicate your medical care.
Which specialists should be involved in the diagnosis?
Recent medical papers* stress that a multi-disciplinary approach to the diagnosis of ILD and pulmonary fibrosis brings better results. This will likely mean meeting a variety of doctors and having the doctors consult with other healthcare professionals, who all play a role in the process. Your situation may vary, but a typical multi-disciplinary team can consist of:
- Pulmonologist –specializes in the respiratory system, including lungs, and can specialize in types of diseases, interprets test results, and clinical data, and manages treatment plan
- Respiratory physiologist – delivers and interprets the respiratory tests to assess the level of disease
- Rheumatologist – assists in the diagnosis of autoimmune disease and other systemic diseases
- Radiologist – specializes in medical imaging such as X-rays and CT scans
- Pathologist – inspects and analyzes any tissues to consult on diagnosis
Which specialists should be involved during treatment?
You’ll still see your primary care physician for routine care. Your primary care physician should be aware of all the specialists you see, and the medications you are prescribed. Your primary care physician may be involved in some testing, such as blood and lab tests.
Your treatment for ILD and pulmonary fibrosis will be led by your pulmonologist, who may refer or involve other specialists as needed. A typical healthcare team is difficult to describe: remember, we are a diverse group and everyone’s path is a bit different. Specialists that can and probably should be part of your team can include:
- Primary Care Physician – monitors overall health and routine medical needs
- Pulmonologist –monitors status of your lung disease and manages treatment plan
- Respiratory physiologist – delivers and interprets the respiratory tests to assess the level of disease
- Rheumatologist – assists in the diagnosis and treatment of autoimmune disease and other systemic diseases
- Respiratory therapist, occupational therapist, or physical therapist –provides pulmonary rehabilitation, exercise, support for supplemental oxygen
- Clinical specialist nurse or physicians assistant – to provide support for symptoms and care
At some point in your disease journey, your team might also include:
- Dietician or nutritionist – provide guidance about food and its impact on health
- Specialists for any accompanying diseases or conditions (such as cardiology issues)
- Patient educators – to provide education
- Sleep doctor – diagnose and treat sleep apnea
- Gastroenterologist – diagnose and treat GERD or esophageal issues
- Counselor – to advise on coping skills
- Support group – to provide shared experiences, support, and coping strategies
- Palliative care specialists to improve quality of life and manage symptoms
- Hospice care specialists to provide care and support near end-of-life
A center of excellence makes things easier
There are many ILD specialists available in the US and other countries. The term center of excellence can include a number of medical centers that have multi-disciplinary teams, pulmonologists who specialize in ILD, and have lung transplant teams. The Pulmonary Fibrosis Foundation (PFF) has identified medical centers throughout the US that have expertise in diagnosing and treating patients with fibrotic lung disease. They identify 70 Care Center Network locations throughout the United States, usually affiliated with large medical centers. These medical centers deliver high-quality patient care with a multi-disciplinary approach, such as those described earlier. Another list of 30 centers of excellence in the US is presented by the ILD Collaborative.
These centers work in multi-disciplinary teams and the members share information and communicate easily. These centers are often large medical centers that also participate in research and have access to the latest knowledge, clinical trials, and many resources that patients might need. Centers are required to have a lung transplant specialist available for consultation and a support group.
You can read about the requirements for Care Center Networks online.
Create a List of Your HealthCare Professionals
It’s a good idea to create a list of all your doctors and specialists and their contact details. We recommend you carry it with you as part of your emergency medical information. Download the form below for your convenience.
Summary
An early, accurate diagnosis is key to getting the right treatment for your interstitial lung disease and for treating your pulmonary fibrosis. While there is currently no cure, pulmonary rehabilitation, antifibrotic medications, management of symptoms, and a healthy lifestyle improve your overall health. We believe patients who have a good healthcare team, learn about their disease, and actively participate in their care and support group enjoy life.
* For more information, see Cottin, Vincent et al. (2022, European Respiratory Review 2022) Multidisciplinary teams in the clinical care of fibrotic interstitial lung disease: current perspectives. Retrieved Oct. 27, 2022, from https://err.ersjournals.com/content/31/165/220003
