Skip to main content
Understanding pulmonary fibrosis

Diagnosing pulmonary fibrosis

Diagnosing lung conditions with pulmonary fibrosis can take a long time—up to 3 years or more—which can be very frustrating.2 PF is a rare disease, and your doctor will want to rule out other, more common diseases before making the diagnosis. Throughout this process, you may take a lot of different tests and will see several types of doctors and specialists.1,3 The conversations you have with your doctor also play a big part in the process of diagnosis. The details of your symptoms, your medical history, and other important information can help point your care team in the right direction towards a diagnosis and, ultimately, the necessary treatment.

Preparing for an appointment

Preparing for an appointment

Whether it’s your first appointment or you’ve had many before, setting some time aside to prepare for your appointment can make a big difference to ensuring you feel confident, make notes, mention your concerns, and ask the questions you want.

Questions your doctor might ask:
  • Do you have a family history of interstitial lung disease?
  • Do you smoke or have you smoked in the past?
  • Have you been exposed to harmful substances at work, such as asbestos?
  • Have there been any changes to your symptoms/have you noticed anything new?
  • Do you have any other medical conditions?
  • If you are on any medications, how have you been getting on with these?

Questions to ask your doctor or nurse

Download and print this conversation guide and bring it to your next appointment.

Symptoms:
  • How can my current symptoms be treated while I wait for my diagnosis?
  • How long could my symptoms last?
  • How will my symptoms be monitored?
  • What should I do if my symptoms get worse?
 
Tests and diagnosis:
  • What is pulmonary fibrosis and could I have it?
  • Could it be something else? How will we find out?
  • When will I have the tests? Are you referring me as urgent or non-urgent?
  • Why do I need these tests?
  • What are these tests for and what will they involve?
  • How soon after the test will I get the results and who will give them to me?
  • What do my test results show and what do they mean?
  • What are we going to do next?
  • How close are we to finding a diagnosis?
Managing your condition:
  • What can I do to help my condition?
  • I’m struggling to cope with my condition. What support is available to me?
  • Are there any support groups you can direct me to?
  • How can I explain my condition to my employer?
  • What changes should I ask to make at my job?
  • Are there any activities I need to avoid?
  • Do I need to make any changes to my lifestyle?
  • Who can I contact if I think of questions later? 
  • Can I see someone in person?

Tests you may have4

  • Blood test and other tests (eg, urine sample)—May identify any blood biomarkers associated with the suspected condition and can form part of a detailed clinical assessment
  • Chest X-ray—May show the scarring caused by pulmonary fibrosis
  • Lung function test—Measures how much air you can blow out of your lungs after taking a deep breath
  • High-resolution computed tomography (HRCT)—Provides a sharper and more detailed picture of your lungs
  • Bronchoalveolar lavage—A small tube is inserted into the lung to take a fluid sample to be examined
  • Lung biopsy—A sample of lung tissue is taken and examined under a microscope
  • Skin test—A small injection is given to check for tuberculosis (TB) infection
  • Arterial blood gas test—A sample of blood is taken from an artery and measured for oxygen and carbon dioxide levels
  • Exercise testing—Measures how well your lungs move oxygen and carbon dioxide in and out of your bloodstream when you are active
  • Pulse oximetry—A small device is clipped onto your finger to estimate how much oxygen is in your blood
  • Antigen testing and antigen avoidance—Blood tests can help find out if you have developed antibodies to any substances that you may be breathing in and resulting in an allergic reaction. Avoiding suspected antigens (‘triggers’) of your symptoms can help support your diagnosis, alongside other tests

After a test, you will usually have an appointment with your specialist to go over the results. They should use clear language to explain their findings, as well as give you enough time to ask questions, so don’t hesitate to ask for clearer explanations if you need to. Consider bringing a family member or friend along to take notes.

Your care team

Throughout your diagnosis journey, in addition to your main doctor, you’ll likely come across several healthcare professionals who are specialists in their own field. They can be involved at various stages of your diagnosis and you may see them more than once depending on your treatment plan or if your condition needs to be monitored over time.5

Your care team

These specialists can include6:

Pulmonologists


(doctors who focus on the lungs)

Rheumatologists 


(if your pulmonary fibrosis is associated with certain types of underlying disease)

Nurses

Occupational therapists

Radiologists, nutritionists, psychologists, physiotherapists, 
and primary care physicians can also be part of your support

Different members of your treatment team are focussed on different areas of your health. Make sure you ask them to share information about your condition and work together to develop a treatment plan specific to you. Read more about treatments for pulmonary fibrosis.

A diagnosis of pulmonary fibrosis can come with difficult emotions.

Next page

Abbreviations: HRCT, high-resolution computed tomography; ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; RA-ILD, rheumatoid arthritis-associated interstitial lung disease; TB, tuberculosis.

  1. Meltzer EB, Noble PW. Idiopathic pulmonary fibrosis. Orphanet J Rare Dis. 2008;3:8.

  2. Cosgrove GP, Bianchi P, Danese S, Lederer DJ. Barriers to timely diagnosis of interstitial lung disease in the real world: the INTENSITY survey. BMC Pulm Med. 2018;18(1):9.

  3. Bradley B, Branley HM, Egan JJ, et al. Interstitial lung disease guideline: the British Thoracic Society in collaboration with the Thoracic Society of Australia and New Zealand and the Irish Thoracic Society. Thorax. 2008;63(Suppl 5):v1-v58.

  4. American Lung Association. How is pulmonary fibrosis diagnosed? Updated September 5, 2024. Accessed October 2, 2024. https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/introduction/diagnosis

  5. Asthma + Lung UK. How is pulmonary fibrosis diagnosed? Updated June 2, 2022. Accessed October 2, 2024. https://www.asthmaandlung.org.uk/conditions/pulmonary-fibrosis/how-pulmonary-fibrosis-diagnosed

  6. Wuyts WA, Peccatori FA, Russell A. Patient-centered management in idiopathic pulmonary fibrosis: similar themes in three communication models. Eur Respir Rev. 2014;23(132):231-238.