Nursing and Associated Health Allies Sickle Cell Disease Initiative

Grant Application

Laura M. DeCastro, MD, MHSc, of Adult Sickle Cell Center, Hillman Cancer Center

 

Proposed Innovation

Sickle cell disease (SCD) is an inherited blood disorder affecting red blood cells. Mostly found in people of African, Hispanic, Mediterranean, and Middle Eastern descent, it affects millions of people worldwide, including about 100,000 Americans. It is associated with lifelong multi-organ complications and a severely shortened lifespan. Children and adults with SCD have red blood cells that are stiff and can block blood flow. This can cause a wide variety of medical conditions, including excruciating pain, chronic anemia, recurring infections, leg ulcers, as well as organ damage and strokes.

More than 400 adults and children with SCD are treated for the disease at UPMC health care facilities. The Nursing and Associated Health Allies Sickle Cell Disease Champion Program is designed to empower registered nurses and other health care providers through education and peer mentoring to improve patient care and outcomes.

 

Improvements in Action

TA key goal of the program is to identify a core group of nurse champions to serve as peer leaders and patient advocates. These champions, who will undergo intensive training on SCD-related clinical issues, will become a resource for their peers and a source of comfort and guidance for patients.

Through the initiative, a series of seven, 30-minute lectures addressing a variety of SCD topics will be developed for champion program participants at UPMC Shadyside, Magee-Womens Hospital of UPMC, and UPMC Presbyterian. In addition, an SCD educational conference and clinical workshop will be developed to provide Continuing Medical Education (CME) and Continuing Education Units (CEU) focusing on sickle cell management to nurses, physician extenders, hospitalists, and emergency staff. It is anticipated that the workshop, with its multidisciplinary approach and patient-centered focus across the lifespan, will become an annual educational event.

 

Results — In Progress

SCD is a largely neglected disease with knowledge gaps that contribute to poor communication between patients, staff, and SCD specialists, as well as poor patient satisfaction and outcomes. This project is expected to increase the comfort level of staff in caring for SCD patients and improve patient care.