Cystic Fibrosis

Posted by .

The St Mary’s Cystic Fibrosis (CF) Clinic provides ongoing care and follow up for patients living with cystic fibrosis. The CF Clinic aims to improve the availability of educational resources for patients to make informed decisions regarding their care options.

As such, the team has identified resources on a variety of topics regarding CF to share with patients, families and care providers. Below is a list of resources and a brief description of the material to assist you in finding the information you may be looking for.

For questions, please contact
Danny Veniott, Program Manager
519-749-6578 ext. 1557
dveniott@smgh.ca

Resources

CF General Management Practice Recommendations

Accelerating The Rate Of Improvements In Cystic Fibrosis Care: Contributions And Insights Of The Learning And Leadership Collaborative
(qualitysafety.BMJ.com, 2014, pages i23-i32)

  • This article describes the CFF LLC evolution and essential elements that have facilitated the increased improvement capability of CF Centers and improved CF outcomes.

Lung Transplant

Cystic Fibrosis Canada Booklet Lung Transplantation and Cystic Fibrosis

  • This booklet provides a good general overview of transplant process including referral, assessment, surgery and post-surgery care and considerations. A great introductory resource for someone wanting to learn more about transplant.

Toronto Lung Transplant Patient Manual

  • This comprehensive manual explains the lung transplant process, including pre-transplant considerations (Chapters 1-7), getting the call (Chapter 8), the transplant surgery (Chapter 9) and post-transplant considerations (Chapters 10-20)

Transplant Referral Video

  • A short, 17 minute video from St. Michael’s CF Program geared to healthcare professionals. This video provides an overview of the referral process for lung transplant, including how to approach the topic with the patient, the referral process and includes a patient’s perspective.

Dr. Tullis Presentation: Life in Limbo: Medical Management of Cystic Fibrosis Patients Awaiting Lung Transplant

  • This presentation is geared to healthcare professionals. It reviews medical management of patients waiting for transplant as well as post-transplant management considerations.

Lung Transplant Decision Aide

  • This tool is geared for adult patients with cystic fibrosis to aide them in making the decision of considering a referral for lung transplant.

Catch Your Breath! A Guide to Lung Transplant for Families and Support People – Toronto General Hospital

  • This document is specifically geared to families and support people of patients considering and/ or going through the transplant process. It provides detailed information on the role of the support person, importance of self-care, information about transplant process, managing stress, resource information and more.

Coping with Transplant

  • This booklet was written to help patients, their families and caregivers recognize and cope with stress before and after transplant. It includes information about common causes of stress before and after transplant, tips on coping with stress, how to access the transplant psycho-social team and recommended resources to learn more.