Long Beach Memorial and Miller Children’s Hospital Long Beach’s Adult Cystic Fibrosis Center is one of 10 centers in the nation to receive a grant from Cystic Fibrosis Foundation (CFF) to continue advancements in care for adult patients with cystic fibrosis (CF). This grant will allow Long Beach Memorial to track ongoing quality improvements by working alongside the top 10 cystic fibrosis centers in the country to adapt best practices to improve lung function and life expectancy of adult patients with CF.
Cystic fibrosis is a genetic disease that affects about 30,000 children and adults in the United States, with more than 1,000 new cases diagnosed each year. In the 1950s, few children with cystic fibrosis made it to elementary school. Today, with advances in treatments and research, people with the disease are expected to live into their 30s, 40s and beyond. Cystic fibrosis is no longer a “pediatric disease.” Pediatric specialists who are trained in cystic fibrosis and pulmonology are needing to transfer care for young adults who have grown up with the disease to adult pulmonologists, who may not be as familiar with the condition.
Because children are living longer with pediatric illnesses such as CF, there’s a need to be able to smoothly transition adolescents and young adults into the “adult” health care setting. The top 10 CF centers designated by CFF, which have completed projects that demonstrated measurable improvements in care, will be mentoring Long Beach Memorial’s adult CF center via weekly phone conferences, CFF webinars and face-to-face meetings. The grant will cover all travel expenses and tools. Long Beach Memorial and Miller Children’s are a perfect fit, since this medical campus has both a free standing children’s hospital and an acute care hospital under one roof. The pediatric CF center at Miller Children’s, works hand-in-hand with adult pulmonologists to provide coordinated, specialized care as the patients transition from the pediatric to adult care setting. Both pediatric and adult pulmonologists regularly communicate and consult on cases, before transition, and after. Doctors, nurses and nurse navigators work together in transition to adult care.
“At Long Beach Memorial, the adult CF population has increased by 10 percent in the last three months, making this the ideal time for us to learn from these best practice hospitals and grow our program,” says Sharyn Flavin, RN, nurse practitioner, Long Beach Memorial. “CF was known in the past as a pediatric disease. Today, the life expectancy for someone living with CF is 38. At Long Beach Memorial, we currently are treating a patient who is in his 60s. Adult CF care is a critical part of our program.”
“The fast-growing population of adult patients with CF may be a result of advancements in medicine, improved CF nutrition programs and new lung therapies that help maintain patients’ health in the face of chronic disease,” says Jeffrey Riker, MD, pulmonologist and physician lead for the adult CF program at Long Beach Memorial.
To assist young patients in a successful transition, preparation begins early and includes clinical assessment of the adolescent’s self-management skills, the development of an individualized care plan, and patient and parent education sessions and counseling. This takes place while the patient continues to receive uninterrupted, developmentally appropriate and psychologically sound health care.
“Cystic Fibrosis is a difficult illness to deal with as a child, but not receiving adequate care as an adult can be even harder,” says Dr. Riker. “Our transitional care program is an extremely essential part of ensuring our patients receive uninterrupted care and continuing cystic fibrosis treatment as an adult. We are very grateful for this grant that will allow us to expand our adult CF program and learn from the top adult CF centers in the country,” says Riker.