CF Education Day 2003

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The Stanford CF Center team is dedicated to providing the latest information about research, clinical care, and disease management for patients, families, and healthcare professionals. The articles on this page are a compilation of some of the information given at our most recent CF Education Day, March 8, 2003


Adherence in Cystic Fibrosis…
Getting the Most Out of Your Treatment Program
by Denise B. Angst, DNSc
Director, The Advocate Center For Pediatric Research
Park Ridge, IL

Treatments for cystic fibrosis improve the health and well-being of individuals with CF. Treatments may improve lung function, nutritional status, and overall survival. The challenge, however, is finding ways to "fit in" these important therapies on a daily basis, while not sacrificing quality of life. This is essential for "living well" with cystic fibrosis.

Treatment of any disease can be difficult
Adherence to treatment is a challenge, not only in cystic fibrosis, but in chronic illnesses in general. In an acute illness (like a bacterial infection), treatment often results in rapid and noticeable improvements in health, but in chronic illness, treatment results are harder to see. Because of this, adherence in a chronic illness like CF requires a higher level of commitment and motivation on the part of the individual or family in order to perform the treatments on a daily basis.

Costs and benefits of treatment
For many, decisions around adherence result from an ongoing analysis of perceived costs and benefits. Costs include financial costs, time, and threats to normalcy and quality of life. Benefits include the benefits that are known from research and prior study (those from clinical trials, that are often talked about by your CF team). But those benefits that are seen and experienced on a personal level by the individual are the benefits that have the greatest influence on adherence. Like any health behavior (e.g., diet, exercise), if perceived costs are greater than perceived benefits, adherence is often compromised. Therefore, It is important that you truly understand the benefits of CF therapies and that you discuss all of this with your CF team.

No one is perfect
For most individuals with chronic illness, adherence is imperfect: all therapies that are prescribed are not performed 100% of the time. The goal for treatment should be

Communication is key
The #1 way to improve adherence is through better communication between patients/families and health care providers. Patients should be open about their adherence difficulties and their questions and concerns about therapies. Clinicians should support and guide individuals toward improvements in adherence, including flexibility in revising the plan of care.

How to improve adherence
While there are no uniform solutions for all individuals or families, several factors have been shown to help improve adherence:

In the end, there are no perfect solutions to "fitting in" CF therapies in your daily lives. The best approach is one that recognizes the value of therapies and is designed to make adherence somewhat easier, but also recognizes individual/family schedules, goals, and other priorities. Your CF team is there to support, not judge you, in these efforts. Talk with them about adherence. Be involved in developing and adjusting the plan of care. Working together, you and your CF team can make this work!

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URL: http://cfcenter.stanford.edu    Sponsored by the Cystic Fibrosis Center At Stanford    Content from the CF Center staff   
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