Current Issues in Quality Improvement in Cystic Fibrosis

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The modern history of cystic fibrosis (CF) is one of continuous improvement. Guidelines and evidence-based medicine provide a general roadmap for directing improvement efforts. Data and measurement are central to quality improvement (QI), a way of keeping score and staying on track. This article describes the history and context of QI in CF, the use of guidelines and data with some examples from the work of one regional consortium, some approaches to developing QI skills with a view to implementing and managing desired changes in CF clinic settings, and the potential benefits and impact of public reporting and data transparency.

Section snippets

Challenges of quality improvement in cystic fibrosis clinics

Quality improvement in CF clinics poses a unique challenge in healthcare. A CFF-accredited CF care center must have a multidisciplinary pediatric team representing pulmonology, nursing, physical or respiratory therapy, nutrition, and social work. Improved survival means that, in 2005, more than 43% of the patients who had CF were over the age of 18 years [1], and additional clinicians providing care to adults are becoming vital members of the team. Some teams include other specialties such as

National quality improvement initiatives

The need for changes in the healthcare system is well understood in society at large. Many campaigns for elected office address the facts that more than 40 million of the United States population have no health insurance, that healthcare costs are rising, and that reimbursements are misaligned. In 1999, the Institute of Medicine (IOM) published To Err is Human[2], which asserts that tens of thousands of patients die each year from medical errors and puts “the issue of patient safety and quality

Data, measurement, and variation

Beginning in the early 1960s, the CFF collected demographic data on patients who had CF and started to organize and accredit CF clinics. The data were used mainly for descriptive statistics and to identify eligible patients for clinical trials of new therapies. In 1982, the Registry became computer based. The database now includes information on diagnosis, genotype, measures of height, weight, and lung function, complications such as liver disease and cystic fibrosis–related diabetes (CFRD),

More data: evidence for best practices from the Patient Registry

The IOM defines quality as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”

In 2002, the CFF convened a group of CF clinicians and QI leaders to develop strategies to start to identify what constitutes best practice in CF care and to enable all the centers in the care network to attain it. As the immediate result of this meeting, acknowledging what had been learned

The role of guidelines—directions for change

Guidelines provide the directions in which changes for QI should be made. Improvements in survival of patients who have CF have tracked with the development of better antibiotics, better pancreatic enzymes preparations, and the development of the CFF care center network [28]. In 1990, the CFF published a consensus document “to promote a uniform level of care and teaching services at CF Care Centers and to provide a general framework for good patient care” [29] and to provide the rationale and

Benchmarking

Benchmarking is the search for those best practices associated with superior performance. Benchmarking is a powerful tool because it opens organizations to new methods, ideas, and tools to improve effectiveness. It helps overcome resistance to change by demonstrating methods of solving problems other than the one currently used and by demonstrating that these methods work, because they are being used by others. Benchmarking has been used widely in business and industry (for example, Xerox

Learning and leadership collaboratives: developing the skills for change

In 2002, the CFF awarded QI grants to the care centers at the University of Utah (for improving CFRD detection and treatment), the University of Wisconsin, Madison (for development of a computer-based CF QI care system), and to the NNECFC QI work. It also funded the first in a series of collaboratives: Sixteen CF care centers participated in the National Initiative for Children's Healthcare Quality CF Quality Improvement Collaborative (NICHQ) [42] based on the IHI model of a series of targeted

Data transparency and public reporting

The 2001 IOM Report “Crossing the Quality Chasm: A New Healthcare System for the 21st Century” [3] stresses that “reform around the margins” is inadequate to address the problems of the healthcare system. The report said: “The healthcare system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice. “The NNECFC centers have been sharing identified data internally since 2000 and

Summary

A solid foundation for QI in CF has been built during the last decade. There are many remaining challenges: QI must become a habit and part of the workplace culture to retain the improvements that have been made. In the experience of many, if teams are not vigilant, old habits reassert themselves. QI must continue to be propagated to more aspects of healthcare and to all the CF clinics in the country. Healthcare disparities caused by socioeconomic factors must be assessed, understood, and

Acknowledgments

This work was possible because of the vision, persistence, and hard work of all the clinicians and providers of the Northern New England Cystic Fibrosis Consortium, particularly William Boyle, MD, Edgar Caldwell, MD, H. Worth Parker, MD, Donald Schwartz, MD, Thomas Lever, MD, Ana Cairns, DO, Ralph Harder, MD, and Terry Kneeland, MPH.

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  • Cited by (0)

    Funding support was provided by Cystic Fibrosis Foundation grants: Measuring, Organizing, and Improving Cystic Fibrosis Care and Outcomes: Regional Organization to Get to Evidence-based Care for CF, OCONNO02C0QI.

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