Complex Care Needed for CF Survivors

The Challenge of Coordinating Care for Cystic Fibrosis Patients

Dan Meyers

(October 2011) The patients themselves have many needs as they battle a disease that clogs the lungs with mucous and that also can wreak havoc with the GI tract because it affects pancreatic enzymes.

There are psychological dimensions to this progressive killer as well.

But thanks to medical advances, many patients who might have died in their teens now live into their 30s and 40s. This realm of care is an example of how improved medicine allows people with congenital conditions to live longer.

But with Cystic Fibrosis (CF), there are outpatient needs and intense inpatient demands.

In the Denver area the network of care might look like this: A child with CF is treated at Children’s Hospital Colorado. He or she then graduates to outpatient care at National Jewish Health.

But for inpatient treatment, the patient likely would go to University of Colorado Hospital, Colorado’s only source of adult specialized CF inpatient care.

So, three hospitals (and CU medical school faculty who work there) have to work together on behalf of people with CF.

“The first cystic fibrosis patient I cared for in the 1980s died at the age of 8,” Allen Wentworth, director of respiratory therapy and pulmonary diagnostics at UCH, recalls. “Now, many survive longer.”

What changed? Better medications to deal with the lack of pancreatic enzymes. Improved ways to clear the mucous, such as a vest that thumps the mucous loose. Lung transplants to extend life. Superior ways to fight infections.

This progress creates new demands on UCH, where the average number of CF patients has more than doubled in five years. In Wentworth’s unit, other patients might require 15 minutes of therapy while a growing number of CF patients might need two hours’ worth—for several weeks.

UCH recently delegated a respiratory therapist to work with National Jewish. One of her key missions will be coordinating the scheduling of interventions so the hospital can ensure enough staff is on hand to provide the intense care CF patients often need.

Wentworth says relationships with Children’s Colorado are good but he wants to explore ways to make the care discussions more formal.

“We communicate a lot,” he says. “But we can collaborate better. We just need to make it happen.”