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.