Patient/Family Collaboration in Cystic Fibrosis

Grant Application

Daniel Weiner, MD, Cystic Fibrosis Center, Children’s Hospital of Pittsburgh of UPMC

 

Proposed Innovation

Cystic fibrosis (CF) is an inherited disease that causes glands throughout the body to make abnormally thick and sticky mucus, involving mainly the lungs and digestive system. It affects more than 30,000 children and young adults in the United States, making them more vulnerable to repeated lung infections.

Recent medical advances in drug therapy and genetics have helped children born with CF lead longer and more comfortable lives. But it is a complicated illness requiring multi-disciplinary care by pulmonologists and other health care professionals, including respiratory therapists, physical therapists, dieticians and social workers. With funding from the Beckwith Institute, this project aims to establish a patient and family advisory board (FAB) to help guide care and enhance the patient-centered approach at the Cystic Fibrosis Center at Children’s Hospital of Pittsburgh.

 

Improvements in Action

The FAB offers an opportunity for patients and family members to provide valuable input on decisions regarding how care is administered. As advisory board members, they will bring the family perspective to discussions as they work alongside health care professionals. Together, they will tackle issues involved with processes and plans to improve the quality and accuracy of care. In addition, they will help with staff orientation, educate medical/nursing students and residents, mentor CF patients and families, and participate in quality and patient communication improvement initiatives.

Due to infection control concerns, virtual meeting technology will be used so patients can participate in discussions without unnecessary exposure.

 

Results – In Progress

Including the perspective of CF patients and their families is expected to improve communication and ensure that health care provided at the Center is truly responsive to the needs, priorities, goals, and values of patients with cystic fibrosis and their families. The “Patient and Family Experience of Care Survey,” developed by the Cystic Fibrosis Foundation, will be offered every 6 months to patients and families seen at the clinic as a way of measuring outcomes.