Home Therapy a Reality for Children with Cystic Fibrosis

Published February 29, 2016

Sean is a 15-year-old high school sophomore.  Sean plays JV football in the fall, indoor soccer in the winter, and lacrosse in the Spring. He’s a popular kid, who next year will represent his class on the Student Governing Board. And Sean has a disease called Cystic Fibrosis (CF).

CF is one of the most common genetic diseases, affecting 1 in 2,500 in the Caucasian population.  It primarily affects the lungs and the digestive tract, and usually requires 2-3 week hospital stays for periodic “clean-outs” with antibiotics and physical therapy.

Sean gets admitted to the hospital once a year for a scheduled clean-out.  And he HATES it.  He hates the food, he hates the feel of hospital bedding. He can’t stand the endless stream of medical students and residents drifting in and out of his room (most of whom don’t know half of what Sean knows about his own disease).

Sean complained to his CF doctor about how much he hates his clean-outs and asked if there were some way he could do his clean-outs at home. Sean’s mother is a blood-drawing technician and his father is an electrician: both understand the basics of the therapy. And wouldn’t it be possible for nursing care to happen at home?

It turns out Sean can get a clean-out at home.  Sean’s doctor offered a compromise: Sean can begin his clean-out in the hospital, to place a long-lasting IV and to make sure his antibiotic doses are correct. This would take 2-3 days.  After this, Sean could go home with an IV pump and daily visits from nurses and physical therapists.

Sean was thrilled.  He could sleep in his own bed, prepare and eat his own food, and chill out in his own back yard.  No more uncomfortable sheets. No more parade of medical students.

Clinical trials have demonstrated that home-therapy for children with CF works just as well as hospital therapy. The child is subjected to fewer tests, and the direct costs of the treatment are much lower. And of course, the children are much happier being treated at home versus the hospital.

If the child and the parents can be taught the basics of the therapy, and with good home nurses and physical therapists, home clean-outs are an option for children with CF.

You certainly won’t get any arguments from Sean.

(Sean’s story is a fictionalized composite of several actual CF patients)