Educational resources for cystic fibrosis

There are many excellent educational resources available to learn more about cystic fibrosis (CF) and CF care. Because of the fast pace of CF research and advances in care, it is always important to know that the information you read is current and from a reliable source.

The following publications are written by the CF Center staff at Children's Memorial Hospital/Northwestern University:

The CF Center News: This newsletter series is written by our CF team for our patients and families. The issues include the following major topics:

CF Center News, Winter 2004

"Going Beyond 'Good Enough': Are We There Yet?"

This article reviews our progress after two years in the National Initiative for Children's Healthcare Quality Collaborative (NICHQ) for CF Centers. The project focused on nutritional health and reducing environmental tobacco smoke exposure through quality improvement processes.

"Cystic Fibrosis Genotyping"

The inheritance of CF, effect of CF mutations on health and common questions about CF genotyping are discussed.

"Is Balance Possible?"

The demands of CF care can be overwhelming. Life can suddenly becomes all about CF, and not about being a family. Achieving balance in family life is the focus of this article.

"PFTs Under Three (for children under 3 years old)"

This article describes Infant Pulmonary Function Testing for infants and young children who are under 39 inches tall. This technique measures lung function while the child is sedated.

CF Center News, Spring 2005

"Bone Health in CF: What You Should Know"

Changes in bone health that can lead to osteoporosis are known to occur in CF. This article discusses the factors that contribute to changes in bone health, and strategies to achieve and maintain good bone health.

"Cystic Fibrosis Foundation Center Accreditation Process: Reflections from the Center Director"

Dr. Susanna McColley, former Chair of the CF Foundation Center Committee, describes the accreditation requirements for CF Centers and several of the goals of the CFF Center Committee, including broader use of quality improvement strategies and many resources for caregivers to support patient education.

CF Center News, Fall 2005

"Pseudomonas Aeruginosa in the Cystic Fibrosis Lung: Inevitable or Preventable?"

Pseudomonas Aeruginosa (Pa) is the most common bacteria affecting CF individuals over the lifespan. Over time, chronic infection with Pa damages the lungs. Where it is found, how it is detected, and what we know and hope to know about Pa is addressed in this article.

"Helping Children Cope With Medical Procedures"

Many children experience anxiety around the thought of being hurt. Preparing a child for medical procedures can help reduce this anxiety. A child life specialist gives suggestions on ways to help children cope.

"And Baby Makes Three...."

Planning a family when a parent has CF requires careful thought and close medical care. An adult with CF shares her experiences during pregnancy and talks about the challenges and rewards of parenthood.

"Vacationing with CF"

Every family can use a vacation. Learn some travel tips from a family of five who found ways to vacation WITH CF.

CF Center News, Spring 2006

"Our Progress Report from the CFF Patient Registry"

CF Care Centers that are accredited by the Cystic Fibrosis Foundation receive a report each year from the CFF Registry that profiles their patient data in many areas including lung function, nutrition, microbiology and prescribed therapies. In addition, Center-specific data is compared to the national data. The National Registry data tell us that significant progress is being made in improving health quality and longevity; and individual Centers have different patient characteristics and variations in care. A discussion of our Center's progress and ongoing plans to continue to improve our patient outcomes is included.