Journal of Cystic Fibrosis Spotlights the Evolving Cystic Fibrosis Care Model

The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.

Aug. 9, 2022 | 4 min read

Updated on Sept. 20, 2022

Many people with cystic fibrosis are experiencing better health and living longer because of highly specialized care and treatments available today. As people with CF live longer, they also have more complex and differing needs to maintain their health. This, along with the onset of the COVID-19 pandemic, led to evolving the care received at CF-accredited care centers, ensuring the continuity of care while also allowing for a more individualized care model to emerge. This month, The Journal of Cystic Fibrosis published a commentary reviewing the implications of these shifts within the care model, offering recommendations to improve the quality of care.  
“The positive impact of CFTR modulators, better health outcomes, increased survival rates, and agile care teams have positioned us to reassess how we think about clinical care for our growing, diversifying CF population,” said Dr. Whitney Brown, senior director, clinical affairs at the CF Foundation. “As we continue prioritizing the needs of each individual, we also must consider ways to provide ample opportunities for connection between people with CF and their care teams.”

Next Steps for Evolving the Care Model 

Data derived from surveys, focus groups, and interviews capture the pandemic’s effects on care programs; the experiences of vulnerable and underrepresented patients; the use of telemedicine to monitor health remotely; and the agility of the CF care model to adapt to a constantly changing world. Informed by learnings from care teams and people with cystic fibrosis during the COVID-19 pandemic, the resulting commentary lays out recommendations to guide the Foundation’s initiative, “Evolving the CF Care Model,” including:

  • Acknowledging individual patient needs as the population becomes more diverse and one model will not fit all
  • Advancing health equity by working to reduce barriers to accessing specialized care
  • Building out specialized care provided by a core CF care team plus additional specialists
  • Expanding patient data so people with CF can directly access, add to, and share health outcomes with their clinicians via easy-to-use, electronic formats
  • Tightening care coordination to ensure seamless delivery across providers and institutions

Learning From a Changing World

The resiliency of CF care teams during the pandemic and the adaptations made to achieve continuity of care was captured in last year’s plenary 1 of the North American Cystic Fibrosis Conference, Meeting the Moment: Lessons Learned from a Changing World. The presentation was delivered by Michelle Prickett, MD, MS, associate director of the CF adult care center at Northwestern University. She was joined by Rhonda List, quality improvement project coordinator at the University of Virginia Cystic Fibrosis Center, who detailed how the care center met the moment during COVID-19. 
“The pandemic was a time of greater team cohesiveness, more connectedness with our CF program peers, and more interdependence between care teams, patients, and families, that forged a stronger partnership than ever before,” List said during the plenary. “What we learned with our patients and families — and with each other — has made us better equipped to respond to the needs of our community no matter what the future holds.”  
The commentary is in response to the December 2021 supplement in The Journal of CF entitled Impact of the COVID-19 pandemic: How Our Response is Shaping the Future of Cystic Fibrosis Care. The supplement, funded by the Cystic Fibrosis Foundation, was created in partnership with cystic fibrosis care team members, individuals with cystic fibrosis and their families, and researchers from The Dartmouth Institute for Health Policy and Clinical Practice.

“We are encouraged that many care teams, along with people with cystic fibrosis and their families, were able to deliver and receive high quality, interdisciplinary care throughout the pandemic,” said Kathy Sabadosa, director of quality improvement and innovation at the Foundation. “It’s a testament to the genuine passion and commitment of the cystic fibrosis community to provide the best possible care to all individuals with CF.” 

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