What about IPF?
Home oxygen therapy providers are well versed in the care of patients with COPD and obstructive sleep apnea. Some providers even specialize in cystic fibrosis. One respiratory disease state that doesn’t garner the attention COPD receives: idiopathic pulmonary fibrosis (IPF).
The number of IPF patients seems to be increasing, yet many providers aren’t familiar with the challenges and opportunities these patients present.
“I get calls from providers seeking information about oxygen modalities for IPF patients,” said Bob Messenger, Invacare’s manager of respiratory clinical education. “When patients start to need liter flows upward of 12 to 16 liters per minute, it becomes challenging for some providers.”
IPF affects about 128,000 people in the United States, with about 48,000 new cases diagnosed annually. The disease is five times more common than cystic fibrosis.
According to a vice president of clinical services at a leading HME chain, “In many cases, patients are put on oxygen before their condition has been diagnosed. Providers don’t always know they have an IPF patient right away.”
Like COPD, the disease is progressive. However, two things set IPF apart from COPD: a patient’s supplemental oxygen requirements tend to move to higher flows sooner, yet, because so many of them are younger, they are likely to remain active longer in spite of the need for more oxygen.
Some providers have embraced the challenge. Advanced Home Care’s Atlanta location has a substantial IPF patient base.
“We have a strong relationship with Emory University Medical Center’s highly regarded lung transplant program, so we serve many of their IPF patients,” said Scott Lloyd, senior director at Advanced Home Care. “IPF patients are unique. Unlike COPD patients, they see their oxygen needs change dramatically over the course of their illness. While IPF patients can use a portable oxygen concentrator in early stages of their disease, they will frequently find it necessary to shift to high-flow concentrators or liquid oxygen delivery systems. High-flow cannulas have also been known to help these patients.”
Messenger added: “One thing that providers should be doing is providing these patients with pulse oximeters.”
With cuts in Medicare reimbursement, caring for IPF patients can be costly, but providers have options.
“Some of those costs can be reduced by using home transfill systems and 3,000 psi cylinders,” said Bob McCoy, managing director of Valley Inspired Products.
Another option for liquid oxygen patients, according to McCoy, is the use of VGL industrial tanks combined with liquid portable units for ambulation.
Lloyd added: “IPF patients are quite well educated about their disease and their needs and many of them can effectively communicate what they need. And they make a deliberate effort to remain active as long as possible.”
Leanne Storch, who was diagnosed with IPF 10 years ago, offers a different perspective. She advises homecare providers to take the time to carefully educate patients during initial oxygen set up.
“People are frightened about what is happening to them,” she said. “We can’t be expected to grasp what the provider is telling us in a few short minutes.”
However, she added, “We are in this situation for the long haul. Eventually, we reach the point where we are capable of simply telling providers what we really need. Good providers listen.”
In the earlier stages of the disease, conserving technology can effectively extend the amount of time an oxygen cylinder will last.
“Conservers that adjust flows automatically between rest and active settings can be particularly effective for these patients,” says Rich Kocinski, president of Inovo. “There are effective conservers available today, like the SmartDose, which are useful even as patients approach higher liter flow needs.”
Lloyd also points out that there are rewards for caring for IPF patients.
“These patients can be expensive to care for, but it is rewarding to actually have O2 patients who have successful lung transplants actually cancel their services,” he said. “It’s important to understand that the best hope for IPF patients is a lung transplant. Of course, that can add to the complexity of caring for these patents.”
Advanced Home Care provides transplant candidates with extra equipment so that regardless of the time of day, the patient will not be delayed in reaching the center within the required four-hour limit.
“A good working relationship with a renowned transplant facility can lead to other referrals either directly from the center or perhaps based on your strong reputation for handling difficult cases,” Lloyd said. HME