Our Summary

This research paper provides recommendations for the cystic fibrosis (CF) community to ensure that those affected by CF are referred for lung transplants in a timely manner. The CF Foundation formed a committee to create these guidelines, focusing on when to refer patients for a transplant, addressing barriers that could prevent a transplant, and transitioning to transplant care. They came up with 21 suggestions based on past research, the practices of committee members, insights from a group of lung transplant recipients with CF, and public feedback. The key strategies for improving access to lung transplants include discussing this option early on, identifying and addressing any potential obstacles to a transplant, and maintaining open communication between CF and lung transplant centers. The ultimate goal of these guidelines is to help medical professionals provide the best advice to their CF patients and decrease the number of CF patients who pass away without being considered for a lung transplant.

FAQs

  1. What is the purpose of the CF Lung Transplant Referral Consensus Guidelines?
  2. How were the guidelines for lung transplant referral developed by the CF Foundation?
  3. What are the key approaches to optimizing access to lung transplant for individuals with cystic fibrosis according to the guidelines?

Doctor’s Tip

One helpful tip that a doctor might tell a patient about lung transplant is to have open communication with both their CF care team and the lung transplant center. It is important for the patient to discuss their treatment options early on and to address any potential barriers to transplant. By being proactive and maintaining open communication, the patient can ensure they are receiving the best care possible and improve their chances of a successful transplant.

Suitable For

Patients with advanced lung disease, such as those with cystic fibrosis, chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis, and other progressive lung conditions, are typically recommended for lung transplant. These patients may experience severe symptoms, decreased lung function, and poor quality of life despite optimal medical management.

It is important for healthcare providers to consider referring these patients for lung transplant evaluation in a timely manner to improve their chances of successful transplantation and long-term survival. Early discussion of the transplant option, assessment of modifiable barriers to transplant, and open communication between the patient, healthcare team, and transplant center are critical in facilitating the referral process and ensuring that patients receive appropriate care.

Overall, timely referral for lung transplant can help improve outcomes for patients with advanced lung disease and may reduce the number of individuals who die without consideration for this life-saving treatment option.

Timeline

Timeline of patient experiences before and after lung transplant:

Before transplant:

  1. Patient is diagnosed with advanced lung disease, such as cystic fibrosis.
  2. Patient’s healthcare team discusses the option of lung transplant as a treatment option.
  3. Patient undergoes evaluation for transplant candidacy, including physical and psychological assessments.
  4. Patient and healthcare team work to address any modifiable barriers to transplant, such as smoking cessation or weight management.
  5. Patient is placed on the transplant waiting list and waits for a suitable donor match.

After transplant:

  1. Patient undergoes lung transplant surgery.
  2. Patient spends time in the hospital recovering from surgery and receiving post-transplant care.
  3. Patient begins a lifelong regimen of immunosuppressant medications to prevent rejection of the transplanted lung.
  4. Patient undergoes regular follow-up appointments with their transplant team to monitor lung function and overall health.
  5. Patient may experience complications or rejection episodes that require additional medical intervention.
  6. Patient works to regain strength and adjust to life with a new lung, including participating in pulmonary rehabilitation.
  7. Patient may experience improvements in lung function and quality of life post-transplant.

What to Ask Your Doctor

Some questions a patient should ask their doctor about lung transplant include:

  1. Am I a candidate for lung transplant?
  2. What are the potential benefits and risks of lung transplant for me?
  3. How long is the waiting list for a lung transplant and what is the process like?
  4. What are the success rates for lung transplant in patients with my condition?
  5. What are the potential complications and side effects of the transplant surgery and post-transplant care?
  6. How will my life change after a lung transplant?
  7. What is the long-term outlook for someone who undergoes a lung transplant?
  8. What support and resources are available to me before and after the transplant surgery?
  9. What are the financial implications of a lung transplant and will my insurance cover the costs?
  10. Are there any lifestyle changes or medications I will need to take after the transplant?

Reference

Authors: Ramos KJ, Smith PJ, McKone EF, Pilewski JM, Lucy A, Hempstead SE, Tallarico E, Faro A, Rosenbluth DB, Gray AL, Dunitz JM; CF Lung Transplant Referral Guidelines Committee. Journal: J Cyst Fibros. 2019 May;18(3):321-333. doi: 10.1016/j.jcf.2019.03.002. Epub 2019 Mar 27. PMID: 30926322