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Care Center Corner


Stony Brook CF Care Center Faculty and Nurse Practitioners from left right: Dr. Catherine Kier, Teresa Carney, Lisa Romard, Dr. Mathew Ednick, Dr. Katharine Kevill, and Dr. Barry Diener.

When Teresa and I started to write this CF Care Center Corner article, it reminded us of our presentation in 2011 at NACFC “The Value of Teamwork.” We enjoyed preparing then, and sharing our experiences, which is very similar to how we feel writing and sharing this Stony Brook CF Care Center story. Stony Brook CF Care Center is more than 20 years old, the CF Team is as strong as ever. Our CF Center is serving as a model for other specialty centers focusing on specific chronic disease here at Stony Brook Children’s Hospital. Our multidisciplinary approach, our strong research focus, our state-of-the-art technology, and our long standing relationships with our patients and families are all the pride of our center!

With cystic fibrosis life expectancy increasing dramatically and continuing to rise, we embrace new faculty, and new and eager CF team members. Together we learn and understand cystic fibrosis with more proactive care, a multidisciplinary patient- and family-centered approach, and ongoing research strides. We are partnering and collaborating with our adult colleagues to build an adult CF care center. The education of the next generation of healthcare professionals regarding advances in the science of CF is as important as the promise of the newly discovered therapies targeting the basic defect of the disease.

Our CF Patient/Parent Advisory Council (PAC) has been an essential component in bridging the CF families and the CF care team. Through monthly meetings, as well as periodic newsletters, the CF families have been empowered to participate in their clinical care, leading to better adherence.

We also take pride in our Annual CF Family Education Day, providing updates on CF clinical care, new therapies, and take time to discuss our CF Center specific data. We hold our Annual CF Family Education Day every spring. We have presented CF updates, and invited compelling guest speakers, a good number of them have cystic fibrosis themselves, and they continue to encourage and empower our patients and families. Our annual education day is strategically scheduled after the North American Cystic Fibrosis Conference (NACFC), to provide the most recent developments in CF clinical care and research.

Since our involvement at the Learning and Leadership Collaborative (LLC VI) in 2008, we have taken on yearly quality improvement projects, with measurable outcomes. We truly enjoy sharing our work and projects at NACFC, including our “Pathway to Improving Pulmonary Function & Adherence to Guidelines of CF Care”, “Nutrition Risk Assessment: Pathway to Improve Mean BMI Percentile in our Pediatric Population”, “Improving Pulmonary Function through Adherence to Chronic Pulmonary Therapies”, “Assessing Independence and Health Responsibility: Bridge to Adult Cystic Fibrosis Care” and our participation in CF R.I.S.E.: CF transition and ownership of care. We love the annual NACFC. It is our yearly “yearn” to meet old friends, as well as new friends and colleagues. We strive every year to have presentations by our own Stony Brook CF Care Team members.

Our CF Coordinator, Teresa Carney, is passionate about her important role as the Facilitator of the CF Foundation sponsored CF Coordinator Mentoring Program since 2012. She has always done a terrific job in this role.

We meet with our New York State CF Newborn Screening Consortium of which we have shared several QI projects including the following “Improving, Screening and Treatment of Vitamin D Deficiency in CF Infants in New York” (lead by Dr. Ren), “Utility of High IRT/No Mutation Category in CF Newborn Screen” (led by Dr. Kier), “Learning from Parental Experiences with Cystic Fibrosis to Improve Services in New York State” (led by Dr. Giusti) and “Reducing the Open Case Rate for CF Newborn Screening Referrals in New York State” (led by Dr Berdella). We collaborate with New York State Department of Health and always continue to improve the New York CF Newborn Screening Program. We have published our experience and algorithm change in the Pediatric Pulmonology Journal this year (August 2015), led by Dr. Catherine Kier. Collaboration with the CF Centers in NYS on a regular basis strengthens all the centers, and sharing ideas for improvement is priceless.

Our overarching goal is to continue to take every opportunity to grow and excel as a center, our strength is our teamwork. We are a small CF center, yet we take pride in all the efforts and projects we have accomplished. We deliver excellent CF clinical care, and give the best teaching and education to our medical students, nursing students, pediatric and medicine-pediatric residents, and pediatric and adult pulmonary fellows.

We will continue our teamwork and collaborate with you all!

Sincerely,

Catherine Kier, MD
Stony Brook CF Center Director


Teresa Carney, RNC, PNP
Stony Brook CF Care Center Coordinator