Cystic fibrosis health care professionals and parent caregivers of individuals with CF from 12 states will gather in Omaha, June 26-28 to observe first-hand how the Nebraska Regional CF Center delivers care for people with cystic fibrosis from first diagnosis in childhood through advancement of the disease in adulthood.
The center was selected because of its success in achieving the best health outcomes for patients in a nationwide network of about 110 care centers accredited by the Cystic Fibrosis Foundation. The visit is designed to highlight proven care processes that are increasingly being adopted by clinicians around the country.
The center includes the University of Nebraska Medical Center for adult care and Children’s Hospital & Medical Center of Omaha for pediatric care.
“Benchmarking site visits are an important part of our quality improvement program and have resulted in accelerating the adoption of best practices throughout our care center network,” said Bruce Marshall, M.D., senior vice president of clinical affairs for the Cystic Fibrosis Foundation. “We applaud the Nebraska CF Center for making a significant difference in the lives of their patients by being a leader in quality improvement.”
Cystic fibrosis is a fatal genetic disease that causes serious lung infections and premature death. It affects 30,000 children and adults in the United States and 70,000 people worldwide. Some 10 million Americans are symptomless carriers of a defective CF gene. The outlook for people with CF continues to improve. Life expectancy for children with CF has more than doubled in the last 30 years, in part fueled by quality improvement programs from the CF Foundation. The median predicted age of survival for people with CF is in the early 40s.
Cystic fibrosis can be detected at birth. All 50 states and the District of Columbia screen newborns for CF. Screened newborns can benefit from early diagnosis and treatment. Children with CF who receive early care improve growth, keep lungs healthy, and add years of life.
“It speaks volumes that many children with CF are now living into adulthood due to treatment advances. Nearly 50 percent of CF patients are over 18 years of age. With this increased longevity, it’s up to us as health care professionals to ensure a smooth transition of care that continues to meet the medical, physical and emotional needs of the patient and family. This requires a multidisciplinary approach and open, clear and frequent communication,” says John Colombo, MD, clinical service chief of pulmonology, Children’s Hospital & Medical Center, and care center director, Nebraska Regional Cystic Fibrosis Center.
“Our job as adult cystic fibrosis providers is to help our young adult patients make the proper decisions for their health as they become adults,” said Peter Murphy, M.D., associate professor of medicine at UNMC and director of the Adult Cystic Fibrosis Program.
"Our care continues to focus on all of the needs of the patient and account for the increasing treatment burden as their CF lung disease progresses, in addition to the increased complexity of their lives with college, spouses, job pressures and children,” Dr. Murphy said.
In 2002, pediatric health care professionals from the Nebraska Regional CF Center participated in the Foundation’s first-ever Learning and Leadership collaborative, an intense quality improvement program.
This collaborative focused on improving nutritional care and parental smoking cessation. In 2008, Nebraska’s adult health care professionals and parent caregivers attended a foundation sponsored collaborative focused on improving nutrition and pulmonary outcomes.
The Nebraska team demonstrated such outstanding leadership and partnership with patients and parent caregivers to improve clinical care, the Foundation invited them in 2010 to help lead the first national adult care quality improvement collaborative.
This is the second benchmarking site visit convened by the CF Foundation at the Nebraska Regional CF Center. In 2007, the Foundation organized a visit of 10 CF health care professionals at the adult care program to learn more about the outstanding medical outcomes of their adult patients.
Key health outcomes for CF care centers accredited by the CF Foundation are available to the public at: http://www.cff.org/treatments/CareCenterNetwork/CareCenterData/.