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

March 17, 2014, British Medical Journal

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

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