Columbia Nursing has received a competitive grant from the Boomer Esiason Foundation (BEF) and Johnson & Johnson to develop an initiative for Cystic Fibrosis (CF) aimed at educating nurses about recent advances and challenges in caring for patients with this genetic condition. Cystic Fibrosis is characterized by chronic obstructive lung disease along with other manifestations such as nutrient malabsorption, malnutrition, liver disease and diabetes.
The fall 2017 conference, which Columbia Nursing will host at its new home on 168th Street and Audubon Avenue, is sponsored by BEF and the Johnson & Johnson TRU Heroes Cystic Fibrosis Nursing Program. In addition to building upon the knowledge and skills of registered and advance practice nurses, the program, The Path Forward in Cystic Fibrosis: Advanced Education for Nurses, will educate leaders from four Cystic Fibrosis Foundation Centers of Excellence (COE) to implement the curriculum at their respective institutions and, in turn, expand the cadre of nurses who will educate hundreds more nurses about the evolution of CF treatment and care. Columbia Nursing is developing the curriculum in collaboration with Columbia University Medical Center (CUMC), a recognized COE renowned for its Gunnar Esiason Adult Cystic Fibrosis & Lung Disease Program.
“Developing the initiative will put Columbia Nursing at the forefront of addressing the learning needs of nursing professionals working to improve CF care,” said Lisa Iannacci-Manasia, clinical instructor, and program coordinator for the initiative. “The advanced education program will provide nurses with knowledge and skills for implementing complex therapeutic regimens, ensuring high levels of adherence to effective therapy, and ultimately improve the quality of patients’ lives.”
CF is among the most common life shortening genetic diseases inherited from both parents. The defect causes the production of thick, sticky mucous that clogs the lungs and digestive system. It leads to life-threatening infections, poor growth and development, and nutritional disorders. It affects 30,000 children and adults in the United States, and 70,000 worldwide. In the past decade, advances in genomic medicine, pharmacology, technology and complex therapies, such as inhalation treatments and lung transplants, have transformed CF from a fatal illness requiring hospitalization to a chronic disease that can be treated on an outpatient basis. According to Judy Honig, associate dean, academic affairs and dean of students, “Previously, people with CF did not survive beyond their teens. For the first time in decades, 50 percent of individuals living with CF are adults.”
Increased longevity among CF patients, whose median age of survival is currently 40, compared to less than two in 1938, has led to new healthcare challenges for nurses. “Advances in science and technology including genomic medicine and lung transplantation mandate a whole new body of knowledge rooted in evidence-based practice for high-level care of CF patients,” Honig said. “The landscape has changed and we now need nurses with knowledge and expertise to care for adult patients living with CF.”
For example, nurses need to gain expertise in caring for CF patients undergoing lung and liver transplants; both of which have contributed substantially to longer survival and improved quality of life, but also require strict adherence to complex therapeutic regimens. “There’s a lot of self-management, including in patient’s homes,” Iannacci-Manasia said. For example some patients put on vibrating vests in lieu of receiving physical therapy, to clear their lungs. “Nurses need to become adept at recognizing when patients are ready to assume that responsibility and implement behavioral strategies to help them manage their disease,” said Iannacci-Manasia.
Adolescents in particular, need specific and tailored support as they achieve and assume a level of self-management for their treatment. Exercise used to be discouraged, but now it’s seen as a way of ensuring better lung capacity into the adult years,” Iannacci-Manasia explained. Meanwhile, nurses need to develop comprehensive responses to promote education for families, teachers and other significant members of patient communities about the importance of physical activity and exercise, especially for young CF patients. Indeed, pediatric CF patients require a layer of family intervention for which nurses are ideally positioned to oversee and monitor.
Additionally, nurses need to address the mental health needs of CF patients and their families. Recent, studies have noted that CF patients and parents of children with CF experience a higher incidence of depression and anxiety than those with other chronic illnesses. “Assessing and addressing the mental health needs of CF patients at every clinical encounter must be established as a nursing standard, said Honig. “We need to increase nurses’ knowledge and sensitivity to the disease to improve patients’ lives,” she added. “This education program will raise awareness of this new era in CF care and will begin to bridge the gap between the state of the science and the bedside. “