Cystic Fibrosis Center at Lehigh Valley Reilly Children’s Hospital Receives Outstanding Care Center Partnership Award

Lehigh Valley Reilly Children’s Hospital’s pediatric pulmonology team has once again earned the Outstanding Care Center Partnership Award given by the Cystic Fibrosis Foundation Delaware Valley Chapter, Lehigh Valley Office, for the third year in a row.

The award recognizes care centers and teams that have gone above and beyond caring for children affected by cystic fibrosis (CF) and their families. CF is a genetic disease that causes a build-up of mucus. It can affect the lungs, digestive system and other organs. Treatments aim to slow the progression of the disease and prevent complications.

“My team could easily be the best CF team in the country – they are the most dedicated and committed group of individuals I could ever ask to work with,” pediatric pulmonologist Jennifer Logan, MD, says. “I am constantly impressed with their tenacity, motivation and perseverance.”

The Children’s Hospital collaborates with Cystic Fibrosis Foundation Delaware Valley Chapter, Lehigh Valley Office. Award recipients are selected based on their commitment to collaboration with local chapter programs and events, efforts to improve patient care processes and outcomes and involvement of patients and families in their improvement efforts.

Lehigh Valley Reilly Children’s Hospital’s Cystic Fibrosis Center met these criteria and more.

Dr. Logan explains a few of the reasons why families facing CF need support and resources: “CF is especially challenging as it affects every child differently. There is a very wide range of disease across the CF population and different levels of response to medications. The disease can also change over time. Issues that an infant may deal with could be very different than when the child is a toddler or adolescent.”

The collaboration with Cystic Fibrosis Foundation gives Children’s Hospital a trusted expert partner to refer patients who need additional community resources and education. They also collaborate with the foundation on fundraising and events and are working with them to expand virtual education programs.

“We want families to know they’re not alone,” Dr. Logan says. “There is a huge network of people wanting to help them and there are resources and a place to go when they need anything.”

Formed by the CF Center, the Parent Advisory Board (PAB) advocates for patients and offers recommendations for patient-centered care based on feedback from patients, caregivers, physicians and administration. It assists with education and planning of new services. The PAB also connects newly diagnosed patients and their caregivers with families who are in a similar situation.

CF can be an isolating disease and it is helpful to have someone to talk to who has been there.

“Having a child with CF can be very overwhelming, especially in the beginning,” Dr. Logan says. “We work to help make everything easier – from how to do their medications and treatments, to helping them with life expenses through our grants, to helping provide support with parent groups.”

The CF Center at the Children’s Hospital offers a wide range of support services that are not always available at other treatment centers.

As part of the program, patients meet with a:

• CF doctor, CF nurse and CF respiratory therapist
• CF registered dietitian who monitors overall nutritional needs
• Physical therapist who helps optimize their activity level
• CF pharmacy team (and CF pharmacy tech within Lehigh Valley Pharmacy Services)
• CF behavioral health therapist and CF social worker
• CF community outreach coordinator who organizes community and parent education events.

There are only about 130 Cystic Fibrosis Foundation-accredited care centers in the country and Children’s Hospital is proud to be one of them. It offers up-to-date care, the latest treatments and a multidisciplinary team of specialists who are ready to deal with whatever CF brings their way.