Pulmonary Fibrosis Resource Library

These resources will help you better understand what PF is, the causes, symptoms, and what to expect as PF progresses.

What is PF?

Pulmonary Fibrosis (PF) isn’t just one disease. It is a family of more than 200 interstitial lung diseases (ILDs) that cause inflammation and/or scarring of the of the lungs. Over time, normal lung tissue is destroyed, rendering them unable to provide the body with sufficient oxygen. Although currently there is no cure, many people living with PF can be helped with the right treatment, support, and for some, lung transplantation.

Breathless for Change: Living With Pulmonary Fibrosis – The Documentary

Read the Patient Education Guide for patient-to-patient advice on how to manage and advocate for care for those living with idiopathic pulmonary fibrosis (IPF.)

Get answers to commonly asked questions about pulmonary fibrosis. Check out FAQs

So You’ve Been Diagnosed with Pulmonary Fibrosis…What’s Next?

Understanding Pulmonary Fibrosis: The Basics – Dr. Lawrence Homik

Patient Education Guide

Created for people living with IPF and their families this handout provides information on what idiopathic pulmonary fibrosis (IPF) is, signs and symptoms, how your doctor will know you have it, tests you may need, treatments, and where to get more information. Download the UHN Idiopathic Pulmonary Fibrosis Handout.


Diagnosis

Pulmonary fibrosis can be difficult to diagnose. In fact, it takes two years on average for patients to receive their PF diagnosis. Patients with PF experience symptoms that are often subtle and similar to other lung disorders. These resources will guide you in conversations with your medical team and help you find specialists near your community.


Treatment & Care

Treatment options for PF depend on the underlying cause. These resources give patients, caregivers, and medical professionals comprehensive information about various treatment options for pulmonary fibrosis within Canada.

Learn about lung transplants in Canada from medical experts and get insights on individual lung transplant experiences from PF patients.

How to Access Lung Transplants in Canada

Lung Transplant Patient Manual (UHN)

Patient Journeys

Pulmonary rehabilitation (or rehab) is a structured program designed for people living with chronic lung diseases like pulmonary fibrosis (PF). These resources will help you learn more about what rehab programs are, how they work, and how to find them in your community

Pulmonary Rehab Videos

The Role of Respiratory Therapists

What You Need to Know About PF and Exercise

Physical Activity and Pulmonary Rehab

One Breath at A Time Exercise Video for people living with pulmonary fibrosis

Exercise Tools

How a Pulse Oximeter can help you when you exercise.

Borg dyspnea (or breathlessness) scale

Rehab Programs and Online Tools

Canadian Pulmonary Rehabilitation Program

Canadian Lung Association Rehabilitation Program Finder

Living Well with Pulmonary Fibrosis, by Respiplus™ is an online tool that helps patients and healthcare professionals improve the management of pulmonary fibrosis.

Although there is no cure for pulmonary fibrosis, there are medications available to slow disease progression. Learn more about the common drug therapies used for different types of pulmonary fibrosis. Some common drug therapies are described below.

Educational Videos

Generic Antifibrotics: Dr. Fell

Drug Therapy for Pulmonary Fibrosis: Dr. Kolb

Drug Coverage By Province

British Columbia – PirfenidoneNintedanib

Alberta – PirfenidoneNintedanib

Manitoba – Pirfenidone & Nintedanib (See page 76)

Saskatchewan – PirfenidoneNintadanib

Ontario – Pirfenidone & Nintedanib (See pages 296-298)

Quebec – Pirfenidone & Ninedanib – English (See pages 118 & 129) / Français (Voir pages 125 et 137)

New Brunswick – Pirfenidone & Nintedanib (See pages 61 & 70)

Newfoundland & Labrador – Pirfenidone & Nintedanib (See pages 209 and 237)

Nova Scotia – Pirfenidone & Nintedanib (See pages 80 & 91)

Prince Edward Island – Pirfenidone & Nintedanib (See pages 348 & 358)

Yukon – Pirfenidone & Nintedanib (Use Drug Formulary search tool)

Northwest Territories – Extended Health Benefits for Specified Disease Conditions Program (Alberta Blue Cross)

Non-Insured Health Benefits (NIHB) – Pirfenidone & Nintedanib

Medication Information Handouts

Nintedanib (OFEV)

Pirfenidone (Esbriet)

Learn more about medication for pulmonary fibrosis

These oxygen therapy resources can help you learn more about oxygen therapy benefits, using oxygen systems, and traveling with oxygen.

How to Access Oxygen in Canada

Learn more about supplemental oxygen


Managing PF

Having pulmonary fibrosis can be an emotional rollercoaster. Friends and family are likely unfamiliar with the disease. It may be difficult to discuss your situation with others. As everyday activities gradually become more challenging, you may need to stop working and ask for help. You may feel angry, stressed, depressed and alone. These resources are intended to help you explore the things you can do to manage your pulmonary fibrosis and live more fully.

Learn about advance care planning in this webinar featuring Karine Diedrich from the Canadian Hospice and Palliative Care Association, which oversees Advance Care Planning Canada. Karine talks about advance care planning, a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.

Tune in to learn about:

  • The five steps of advance care planning
  • Starting conversations about advance care planning with the people that matter most to you
  • Choosing a substitute decision-maker

Karine Diedrich

Karine Diedrich is the Director, Operations and Engagement at the Canadian Hospice Palliative Care Association (CHPCA). She joined CHPCA as Director, Advance Care Planning in January 2021. Prior to joining CHPCA, she served as Vice-President, Public Engagement and Knowledge Mobilization at Volunteer Canada and National Priority Advisor at the Canadian Centre on Substance Use and Addiction. Karine holds a BA in Criminology from Carleton University and a Professional Certificate in Partnership Management from the Norman Patterson School of International Affairs.

Government of Canada Benefits Finder

This online Benefits Finder may suggest benefits from federal, provincial, or territorial governments, and does not collect or track your information.

Living with PF Resources

UHN IPF Information for patients and families

inIPF.com by Boehringer Ingelheim

Pharmaceutical Treatment Information

UHN Handout – Pirfenidone (Esbriet™) – Information for patients

UHN Handout – Nintendanib (OFEV™) – Information for patients

Calculating the Cost of Medical Device Electricity Use

The CPFF receives a number of inquiries from international PF patients around the world who want to get access to Esbriet, where it has not yet been approved in their country – as patients want to know if it can be prescribed for them in Canada.

The University Health Network, through Toronto General Hospital, has an International Patient Service that can be accessed here https://www.uhn.ca/IHP/International_Patients

Palliative care addresses pain and symptom management and provides social, psychological, emotional and spiritual support, as well as providing support to caregivers and family members. These palliative care resources can help you better understand who might benefit from a palliative care approach and how to plan for the future.

Digital Resources

How to Access Palliative Care in Canada

How to Access MAiD in Canada

Educational Videos

A Palliative Approach to Care

Manitoba Palliative Care

Organizations That Can Help

Canadian Hospice Palliative Care Association

Unresolved stress can aggravate an existing illness, such as pulmonary fibrosis, and can affect individuals living with the disease, as well as those who care for them. The mental health resources offer coping strategies to help you adjust to your new normal so that you can improve your quality of life, reduce discomfort and rebuild your sense of self-worth. 

Patient Journey Videos

Watch these patient journey videos to learn how people living with pulmonary fibrosis are coping and finding ways to make life a little less difficult.

John Dennis’ Pulmonary Fibrosis Journey

Rob Garbutt’s Pulmonary Fibrosis Journey

Naomi Matsushita’s Pulmonary Fibrosis Journey

André Plouffe’s Pulmonary Fibrosis Journey

Jeannie Tom’s Pulmonary Fibrosis Journey

These nutrition resources offer tips on how to manage your disease and maintain your quality of life through nutrition.

Educational Videos

Anti-inflammatory Diet for Pulmonary Fibrosis – Tracey Reed

Nutrition & Pulmonary Fibrosis – Elizabeth McLeod, RD

Digital Resources

UHN Tip Sheet – Nutrition Tips While on Prednisone

Anti-inflammatory Recipes – Cabbage Fennel Apple Slaw & Anti-inflammatory Salad Dressing

Read the Patient Education Guide for patient-to-patient advice on how to manage and advocate for care for those living with idiopathic pulmonary fibrosis (IPF.)

  1. Look at the label on your concentrator or other medical device that you are using. It states the number of volts and amps the concentrator uses. If not found on the concentrator, look for it in the manual or ask your oxygen provider.
  2. As an example, we will use 115 volts at 4 amps. To convert to watts (W), multiply volts and amps: 115 volts x 4 amps = 460W.
  3. Next, calculate the number of kilowatt (KW) hours you use per year. Multiply the watts your concentrator uses by .001 KW/W to convert watts to kilowatts. In our example, 460W x .001 KW/W = 0.46KW.
  4. Multiply this answer by 24 hours/day x 365 days/year if you are a continuous user. If you do not always have your oxygen on, multiply by the average number of hours used per day and then by 365 days/year.
  5. To continue the example, 0.46KW x 24 hours/day x 365 days/year = 4,029.6 KWH/Y. This is the kilowatt hours you have used to run your concentrator the past year.
  6. Now, multiply the above result by the cost per kilowatt hour your electric company charges you. It may be listed on your bill or you could call their office. Let’s say they charge you 8 cents per kilowatt hour (prices will vary widely depending on the region in which you live). To finish our example: 4,029.6 KWH/Y x $0.08 = $322.37. This is the amount you paid for electricity to run your concentrator and can deduct as a medical expense.

Vaultt, is an app that helps patients, families, and caregivers securely organize, track and share vital health information. In this webinar Audrey Bond, founder, and CEO of Vaultt presents insights into how patients with chronic diseases and their caregivers could benefit from an app that helps them better manage their health journey, specifically their health information. She discusses the gaps in our current healthcare system, the importance of data security, and how the Vaultt app works.

Audrey Bond

Audrey has been an entrepreneur for over 30 years and is passionate about helping patients and families dealing with chronic health problems. Her desire to help others came from a place of need as she was caring for her aging parents, who were both disabled, and she struggled to find a solution that worked. She has spoken on many panels on the topic of health tech and entrepreneurship and is currently mentoring three youth entrepreneurs, including her 18-year-old daughter. You can find the Vaultt app at the Apple Store: https://apps.apple.com/app/apple-store/id1481991621.


CPFF Support Group Resources

CPFF support and education groups play an important role in helping individuals living with IPF, their families and friends better understand the disease and their options to deal with its mental and physical impact. Learn about CPFF support groups and other organizations that can help you with your journey with pulmonary fibrosis.


Covid-19

Information about COVID-19 and various international, national, provincial and local statistics and policies are changing constantly. The following are some trustworthy resources for COVID-19 information and updates. For more local information, including municipal by-laws related to the virus, consult your local government official website.

Information about COVID-19 and various international, national, provincial and local statistics and policies are changing constantly. The following are some trustworthy online resources for COVID-19 information and updates, as well as the corresponding social media sites. For more local information, including municipal by-laws related to the virus, consult your local government official website. We’ve also added some links to mental health and caregiver websites that may be helpful during this time. Explore helpful links.


CPFF Volunteer Resources

CPFF welcomes all volunteers interested in making a difference in the fight against PF. 

Whatever the challenge, CPFF supporters have always risen to the occasion to increase awareness, hope, and funds for people living with pulmonary fibrosis. With this handy DIY Fundraising Kit, we hope to inspire and empower you to organize your own Community Walk, Roll, Run. Get the CPFF DIY Fundraising Kit.

Submit your application to volunteer with CPFF and help us make a difference for people living with PF.


CPFF Reports

CPFF is dedicated to understanding and supporting the changing needs of people living with pulmonary fibrosis. These informative reports provide insights into the disease and the needs of patients and caregivers.

The CPFF Patient Charter is a document which sets out a number of patient rights in an effort
to create a national standard of care. The Charter makes recommendations to provincial
governments, institutions and health care organizations to improve patients’ overall
quality of life, while simultaneously supporting efforts for targeted research to develop
better long-term treatments, and to ultimately find a cure.

Read the CPFF Patient Charter: CPFF PATIENT CHARTER / LA CHARTE DES CANADIENS ATTEINTS DE FPI

The Burden of IPF in Canada Report reveals major gaps and disparities in care for Canadians living with idiopathic pulmonary fibrosis (IPF). Developed in collaboration with CPFF and Hoffmann-La Roche Limited, with input and guidance from a committee of IPF experts, the report provides credible, evidence-based information on the prevalence, economic impact, diagnosis and treatment of IPF. It uncovers the issues facing patients, their caregivers, and the health care professionals who treat them. Importantly, the report provides workable solutions to substantially alleviate the considerable burdens associated with the condition.

Read the report: BURDEN OF IPF IN CANADA REPORT / LE FARDEAU DE LA FIBROSE PULMONAIRE IDIOPATHIQUE AU CANADA

In the spring of 2020, we asked the PF community to complete a survey about their experiences living with pulmonary fibrosis, its impact on their lives and what they needed for the future. More than 640 people living with PF and their caregivers from across the country responded to our call. Read the report: Breathless for Change Report 2020 / À bout de souffle pour du changement 2022

Read the Patient Education Guide for patient-to-patient advice on how to manage and advocate for care for those living with idiopathic pulmonary fibrosis (IPF.)


CPFF Newsletters

Read the CPFF newsletter for the latest news, research updates, patient and caregiver support, plus more.


Provincial Resources

Find resources in your province for pulmonary fibrosis medical care and support.


Clinical Trials

Find resources about clinical trials.

Unfortunately, clinical trials to participate in can be difficult to find. Most often, trials are offered by the clinics or hospitals that choose to participate, so it may be worth asking if there are available clinical trials that may be an option for you. Because PF trials tend to involve smaller numbers of patients from many countries, the number of places that sponsors use can also be small.

There are a couple of websites where it is possible to search for clinical trials for pulmonary fibrosis

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world:

The PF Foundation clinical trials education centre from the United States offers a clinical trial finder and more

Pulmonary Fibrosis Organization has a Clinical Trial Finder for pulmonary fibrosis related to conditions https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/clinical-trials-education-center

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world

The Center for Information and Study on Clinical Research Participation (CISCRP)

Informing patients and families about clinical research: The Center for Information and Study on Clinical Research Participation’s (CISCRP) core mission is to provide accessible, relevant, useful, high quality educational resources, programs, and services that increase awareness and understanding of the clinical research process; recognize and appreciate the unprecedented gift of participation in clinical trials; enhance and enrich the participation experience for patients and their families; and promote engagement and partnership between clinical research professionals, patients, and the public. https://www.ciscrp.org/

Clinical Trials and Drug Safety In Canada

or download the pdf file.

Clinical Trials: An Overview (Video)

Todd Georgieff provides us with a detailed, easy-to-understand, walk-through of clinical trials and how they work. Learn about the different types of clinical trials, why we need them, their key aspects, recent innovations, and how to find them.