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Profiles of Change

The Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the leading organization in the United States devoted to curing and controlling cystic fibrosis (CF), a fatal chronic life-threatening genetic disease that affects about 30,000 people nationwide. Established by parents in 1955, the Foundation, headquartered in Bethesda, MD, supports a nationwide network of more than 115 Foundation-accredited CF care centers, which provide vital treatments and other CF resources to people with CF and families. Today, as a result of dramatic improvements in research and care, the median age of survival is nearly 37 years old, and 43 percent of the CF patient population is age 18 or older.

The Foundation has based much of its work on the belief that strengthening patient/provider partnerships facilitates and accelerates improvement. To improve outcomes, CF care teams (with patients and families at their core) need information at the point of care delivery, including current care guidelines, patient alerts, clinical reminders, and graphical displays of change in key outcomes over time.

A national strategic plan, based on extensive input from CF center directors, adult program directors, nurse coordinators, adults with cystic fibrosis, parents of children with cystic fibrosis, quality improvement (QI) professionals, and advisory group members, was developed and implemented by the CF community in 2003. The plan proposes to continue the CF Foundation's mission to extend life expectancy and improve the quality of life. The quality improvement work is focused on seven worthy goals aimed at accelerating the rate of improvement in CF care.

Seven Worthy Goals

  1. To make people with CF and their families full members of the care team;
  2. To help people with CF achieve normal growth and nutrition status;
  3. To diagnose respiratory infections early and ensure that the right therapies are received;
  4. To decrease the spread of germs between people with CF;
  5. To prevent complications and/or to diagnose and treat them early;
  6. To provide care regardless of race, age, education or insurance coverage; and
  7. To support all transplantation and end-of-life care decisions.

Goal number one of the Seven Worthy Goals that motivates the CF Foundation's improvement efforts is:

"Patients and families are full partners with the CF care team in managing this chronic disease. Information and communication will be given in an open and trusting environment so that every patient/family will be able to be involved in the care at the level they desire. Care will be respectful of individual patient preferences, needs, and values."

Almost 40 years ago, the Cystic Fibrosis Foundation started a Patient Registry to track the health of people with cystic fibrosis across the United States. Today, information about 23,000 people who receive care at CF Foundation-accredited care centers is collected and added to the Patient Registry every year. The type of information collected includes state of residence, height, weight, gender, genotype, pulmonary function test results, pancreatic enzyme use, length of hospitalizations, home IVs, and complications related to CF.

Information in the Patient Registry helps caregivers and researchers see new trends, design clinical trials to test new therapies, and improve the delivery of care for people with CF. In December 2006, the Foundation released outcomes data for all its network care centers to educate people with CF, their families, and clinicians and to inspire them to work together for the best outcomes.

The CF Foundation is one of the first health organizations in the country to make its health outcomes data available to the public. This is a bold step and will bring rewards for people with CF and families and the quality of cystic fibrosis care - while promoting interest in making other health data public. The CF Foundation encourages people with cystic fibrosis and their families to get involved in quality improvement efforts at their care centers.

Public reporting and other efforts to engage people with CF and their families as full partners are central to a comprehensive quality improvement program launched by the Foundation in 2002. The initiative includes training care center staff, providing tools to identify and implement best practices, and building stronger partnerships between patients and families and care center clinicians.

To learn more about the QI initiative and how public reporting is inspiring action and strengthening the partnership between people with CF, their families, and CF care centers, watch two archived Web casts: Quality CF Care is More Than the Numbers and One Team's Story: Raising the Bar for CF Care.

The CF Foundation has disseminated an Action Guide for Accelerating Improvement in Cystic Fibrosis Care to all its affiliates. The guide is intended to help CF center staff, and people with CF and their families, partner together to evaluate how well the CF center functions and offers methods for improvement. The workbook provides tools, forms, a DVD, and step-by-step processes to achieve higher quality care, augment workforce morale, and enhance satisfaction and partnerships between staff and people with CF and their families.

CF Centers demonstrate commitment to patient- and family-centered care in a myriad of ways. The Foundation's Action Guide for Accelerating Improvement in Cystic Fibrosis Care provides a framework for patient and family involvement. It suggests how patients and families might be involved, such as by serving as:

  • Members of committees,
  • Members of task forces,
  • Advisory board members,
  • Faculty for staff education,
  • Mentors for patients, family, or staff,
  • Trainers or orientation leaders in patient- and family-centered care for staff,
  • Members of Quality Improvement Teams,
  • Facilitators,
  • Evaluators,
  • Content Experts/Authors of center materials, and
  • Writers, editors, developers of Center newsletter.

Recognizing that there are countless ways that people with CF and their families can be involved and participate in care is one element of the CF Foundation's commitment to patient- and family-centered care. Mutual trust and respect must be built into every role, no matter at what level people are serving, whether they are staff, they have the disease, or are a family member or support person.

The Foundation is also currently collaborating with the Institute for Patient- and Family-Centered Care supporting activities at CF care centers aligned with the Institute's core concepts and framework for patient- and family-centered care. CF care centers across the country have invited patients and families to serve as members of improvement teams, act as center advisors, form peer-support groups, and share information via list servs, emails, and newsletters. Nationally, the Foundation has supported numerous education forums on patient- and family-centered care including presentations at national meetings, Web casts on quality improvement and public reporting, and a toolkit of template letters and case-studies to foster patient and family involvement in quality improvement.

The Institute for Patient- and Family-Centered Care appreciates the Cystic Fibrosis Foundation's support for the Institute's Hospitals Moving Forward with Patient- and Family-Centered Care: An Intensive Training Seminar Enhancing Quality and Safety for Patients and Their Families, to be held April 23 - April 26, 2007 in Portland, ME.