Posted on February 20, 2001 at 9:51 a.m.
BIRMINGHAM, AL — UAB (University of Alabama at Birmingham) has begun seeing adult patients with cystic fibrosis (CF) at UAB Hospital and the Kirklin Clinic in February. Patients with CF require frequent hospitalizations and outpatient care, and are typically treated in pediatric hospitals from birth. In recent years, improvements in the treatment of the disease have nearly doubled the life expectancy for CF patients, allowing many to live well into adulthood.
“The median age for patients with CF has now climbed to the mid-30s, and many survive well into their 40s, says Randy Young, M.D., director of the Division of Pulmonary, Allergy and Critical Care Medicine at UAB. “These are adults, with adult healthcare needs and requirements that can best be met at a facility designed to treat an adult population.” Better medications, advances in early diagnosis, better nutrition and improved exercise therapies are all cited for the increase in life expectancy.
There are nearly 100 CF patients over 21 years of age who currently receive regular care at Children’s Hospital in Birmingham. Some have already made the switch to the UAB Adult Cystic Fibrosis Program and all are expected to make the transition by the end of June.
“Adults with CF are at risk for conditions such as diabetes and osteoporosis, and susceptible to any other health concerns common to all adults,” Young says. “Shifting these patients to UAB provides them with the full range of adult health care they need and allows the pediatric pulmonologists at Children’s Hospital to focus on treating children, which is their primary mission.”
“There are psychological aspects as well,” says Joy St. John, RN, CRNP, nurse practitioner and coordinator at the adult CF clinic. “CF patients are periodically hospitalized, for perhaps as long as two weeks, and it can be trying on a 30-year old to be in an environment structured for the care of children.”
Treatment in an adult setting helps patients assume responsibility for their own health care needs, St. John says, and provides re-affirmation that they are recognized as mature, functioning adults.
Some medical equipment and diagnostic machines in a pediatric hospital are sized for children, and adults may be too large to utilize such equipment comfortably, Young notes.
“We must now recognize that people with cystic fibrosis are routinely living into adulthood,” Young says. “There are new treatments being evaluated that are suitable for adult populations, such as lung transplantation. Continued research, like the groundbreaking work done at UAB’s Gregory Fleming James Cystic Fibrosis Research Center, holds additional promise for adults. More and more, these patients will need an adult perspective in the care and management of their disease.”
The national Cystic Fibrosis Foundation is encouraging the transition of adult patients from pediatric centers to adult health systems.