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Improving care, access and outcomes of lung transplants for patients with cystic fibrosis is the focus of 10 high-performing transplant centres in North America, with Toronto recognized as an international leader in their care.
Toronto General Hospital – the only Canadian site – and nine centres in the United States are part of an ongoing U.S. Cystic Fibrosis Foundation consortium of leading academic transplant centres whose goal is to improve the lung transplant experience for people with cystic fibrosis (CF).
As part of the Foundation's commitment to this goal, care teams from 18 blue-ribbon CF and transplant programs, including the University of Pittsburgh, Duke University, Johns Hopkins and Cleveland Clinic, came to Toronto recently for a "benchmarking visit" to observe and learn how St. Michael's (SMH) and Toronto General (TG) Hospitals work together to ensure that CF patients are well cared for before and after their lung transplants to achieve outstanding results.
Toronto was chosen for a visit due to its excellent transplant outcomes for CF patients, and strong culture of collaboration between the transplant and CF care teams.
Lindsay Bishop, 31, a CF patient who received a lung transplant at TG twice, and a member of the Toronto organizing team, told the conference audience that constant and consistent communications between the CF and transplant teams is crucial in providing the patient with a "clear roadmap" of the care plan.
"It's difficult for CF patients after transplant because we still have CF," Lindsay says. "We need to know where to go and what resources there are for us if we need that help."
Dr. Christian Merlo, Associate Professor of Medicine and Epidemiology, Johns Hopkins University School of Medicine, notes that TG takes on some of the highest-risk patients, yet their outcomes are excellent.
"We are interested in adopting some of these strategies to improve allocation and (donor organ) graft survival in the U.S.," Dr. Merlo says.
Dr. Cecilia Chaparro is the first respirologist to hold a joint appointment in the SMH Cystic Fibrosis Clinic and TG's lung transplant program. She and a team of seven from TG were the driving force in organizing the three-day conference in Toronto.
From TG, members of the organizing team included: Post-transplant co-ordinator and Co-lead Josie Dorosz, Pre-transplant co-ordinator Louise Won, nutritionist Brooke Stewart, pharmacist June Wang, social worker Laura Middleton, as well as Lindsay Bishop and her mom, Sharon Bishop.
"What is unique for CF patients in Toronto is the strong communication between the two hospital teams, resulting in exceptional and comprehensive care for our patients," says Dr. Chaparro.
"We identify issues and barriers early, and our patients trust us to work with them to identify the best solutions.
"We encourage our patients to watch webinars from CF Canada to learn about nutrition, digestive challenges, CF-related diabetes, sexual health, relocation expenses, mental health challenges, and to talk about this with our teams."
And this teamwork between the two hospitals and the continuum of care is paying off.
Dr. Lianne Singer, Medical Director of the Toronto Lung Transplant Program, and a Principal Investigator in research on improving lung transplantation in the U.S. consortium, points to a 2017 study of CF patients which showed a 10-year survival advantage for Canadian patients (50.9 years vs 40.6 years in the U.S.)
Some of this advantage – in addition to nutritional support and health insurance – is because Canadians have greater access to transplants than patients in the U.S.
The International Registry on Organ Donation and Transplantation showed that in 2017 Canada performed 348 lung transplants, with a rate of 9.51 per million population (PMP), higher than the U.S., at a rate of 7.61 PMP, and Spain – which leads the world in deceased organ donation – at a rate of 7.8 PMP.
Also, Ontario leads in lung transplantation, performing 167 in 2017. TG is the only lung transplant program in the province, and performs about half of all lung transplants in Canada. Some 18 per cent of all lung transplants performed at TG have been for patients with CF.
The probability of surviving one year after a lung transplant at TG is about 90 per cent; at five years it's about 70 per cent, higher than U.S. rates.
About one-third of all transplants at TG are due to the innovative Toronto Ex Vivo Lung Perfusion (EVLP) System. This system for high-risk donor lungs, a world-first pioneered at TG in 2008, assesses, improves and treats donor lungs, adding previously unusable lung into the donor pool, so that many more are available for transplant.
In just five years, EVLP has been one of the innovations that has increased the number of lung transplants performed in Ontario by 70 per cent.
Despite general improvements in CF patient survival after lung transplants in North America – and Toronto specifically, – many CF patients in the U.S. are not offered this treatment option.
Dr. Joseph Pilewski is Co-Director of the Adult Cystic Fibrosis Program at the University of Pittsburgh Medical Centre, one of the largest lung transplant centres in the U.S., performing from 60 to 200 transplants a year. He points out that up to 40 per cent of patients in the U.S. who meet transplant referral criteria never get referred or evaluated for this treatment option.
Organ donation system and more prescriptive in the U.S.
There are still many misperceptions about what lung transplant has to offer, who exactly is eligible, and the benefits of receiving a lung transplant, he says. Currently, double-lung, heart-lung and liver transplants are the only definitive treatments for CF patients with progressive disease.
Dr. Pilewski adds that the organ allocation system is different and more prescriptive in the U.S., resulting in up to 15 per cent of CF patients on wait lists dying from the illness before they receive a transplant in the U.S. In Europe, it's about 5 per cent and at TG 2.1 per cent.
"Good communication facilitates the transfer of information – such as medical history and any complications – ensures good outcomes, and gives patients the reassurance that the CF team is advocating and communicating with the transplant team," he says. "The patient gets educated early on and knows what to expect in order to make a decision about a lung transplant."
Dr. Pilewski notes that the CF and transplant teams in Toronto pay careful attention to the different learning styles of patients, ensuring that the content is comprehensive and tailored to what patients want to know.
Dr. Merlo says that he wants to identify the best practices in both the U.S. and Canada, to standardize how organs get allocated among various centres, and to help U.S. patients navigate the complex journey in getting a transplant.
What he will take away from his visit to Toronto is the importance of the team and strong leadership.
"Everyone has to work together to make this work for patients," he says. "We saw how the teams in Toronto are on board to make the best decision for the patient.
"It's not just one person, everyone has a voice. Everyone's opinion is listened to and respected. And everyone feels comfortable in voicing their opinion. That was awesome to watch."