CF Foundation and CF care expert partnership yields striking progress for people with cystic fibrosis

March 17, 2014

A decade of strategic efforts to improve care has had a key role in improving quality of life and added years to predicted survival for people with cystic fibrosis (CF) in the United States, according to the editors of a BMJ Quality & Safety supplement dedicated to the disease.

Health outcomes for CF have improved dramatically following implementation of an innovative and aggressive plan to promote at CF care centres.

This includes benchmarking comparisons of current care with best practice; use of a patient registry to track outcomes; patient and family involvement in improvement processes; and collaborative improvement networks to foster standardisation and improvement of care practices.

This "remarkable era" has been driven by concerted efforts to improve care, as well as strong leadership among treating people with the disease, and resources from the Cystic Fibrosis Foundation, write David Stevens of the Dartmouth Institute for Health Policy and Clinical Practice in New Hampshire and Bruce Marshall of the Cystic Fibrosis Foundation.

Ten Years of Improvement Innovation in Cystic Fibrosis Care includes reports on a range of improvement initiatives, ranging from the impact of patient education on improving adherence to critical daily treatments, and strategies for boosting nutritional status.

It also covers better management of worsening symptoms and infections and enhanced continuity of care as children with the condition increasingly survive into adulthood and transition to adult care services.

Process outcomes, such as more timely clinic visits, higher rates of flu vaccination, and more effective monitoring of associated problems, including diabetes and depression, have all improved. So too have key clinical outcomes, such as improved lung function and nutritional status, write Stevens and Marshall.

Kathryn Sabadosa, author of one of reports in the supplement states: "As the mother of an adolescent with CF, I am grateful for the CF Foundation's leadership in creating a culture that sets the bar high, strives for exemplary care, and values my son as a partner in improving care and maintaining his health."

Brent James, vice president for medical research and executive director, Institute for Health Care Delivery Research, Intermountain Healthcare, and known internationally for his innovative work on improving the quality and safety of , comments: "Progress in CF-related care delivery provides a model for clinician-scientists' massive opportunity to improve health care delivery and patient outcomes in the future."

Explore further: Support players needed to improve primary care delivery

More information: A decade of health care improvement in cystic fibrosis: lessons for other chronic diseases, DOI: 10.1136/bmjqs-2014-002871

Related Stories

Support players needed to improve primary care delivery

January 25, 2013
(HealthDay)—Practice facilitators and care managers can play important roles in improving delivery of primary care, according to a study published in the January/February issue of the Annals of Family Medicine.

Gaps exist in patient-centered quality of CRC care at VA

February 8, 2014
(HealthDay)—Patient-reported quality assessment measures reveal substantial gaps in patient-centered quality of colorectal cancer care, according to a study published online Feb 3 in the Journal of Clinical Oncology.

'CLER pathways to excellence' document issued

February 7, 2014
(HealthDay)—The Clinical Learning Environment Review (CLER) Pathways to Excellence document has been released for graduate medical education as a foundation for preparing the physician workforce in patient safety and quality ...

Gene replacement in pigs ameliorates cystic fibrosis-associated intestinal obstruction

May 8, 2013
Cystic fibrosis (CF) is caused by mutations in CFTR and is characterized by dysfunction of the lungs, liver, pancreas, and intestines. Approximately 15% of babies with CF are born with an obstruction of the small intestine ...

Study finds that people with cystic fibrosis who live in deprived areas have worse health

January 29, 2013
A study by the University of Liverpool has found that people with Cystic Fibrosis (CF) who live in deprived areas have worse growth and lung function than people living in more advantaged areas.

Recommended for you

Blowing smoke? E-cigarettes might help smokers quit

July 26, 2017
People who used e-cigarettes were more likely to kick the habit than those who didn't, a new study found.

Brain disease seen in most football players in large report

July 25, 2017
Research on 202 former football players found evidence of a brain disease linked to repeated head blows in nearly all of them, from athletes in the National Football League, college and even high school.

Safety of medical devices not often evaluated by sex, age, or race

July 25, 2017
Researchers at Yale and the University of California-San Francisco have found that few medical devices are analyzed to consider the influence of their users' sex, age, or race on safety and effectiveness.

Why you should consider more than looks when choosing a fitness tracker

July 25, 2017
A UNSW study of five popular physical activity monitors, including Fitbit and Jawbone models, has found their accuracy differs with the speed of activity, and where they are worn.

Dog walking could be key to ensuring activity in later life

July 24, 2017
A new study has shown that regularly walking a dog boosts levels of physical activity in older people, especially during the winter.

Study finds 275,000 calls to poison control centers for dietary supplement exposures from 2000 through 2012

July 24, 2017
U.S. Poison Control Centers receive a call every 24 minutes, on average, regarding dietary supplement exposures, according to a new study from the Center for Injury Research and Policy and the Central Ohio Poison Center, ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.