CF Education Day 2003
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
- Factors Affecting Adherence in CF
by Denise Angst, DNSc
- Legal Strategies for People with CF and their Families
by Beth Sufian, JD
This presentation is not meant to be legal advice. Please consult an attorney if you have specific questions
- Distal Intestinal Obstruction Syndrome
by Manuel Garcia, MD
- Mealtime Behaviors of Infants and Toddlers
by Julie Matel, RD, MS
- Gene Therapy Update
by Zoe Davies, PNP
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
- to work together with the CF team to find ways to improve and optimize adherence
- to jointly develop a plan of care
- to check the effectiveness and adherence to that plan of care on a regular basis.
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:
- Make treatments routine - Many studies have shown that when treatments or any health behaviors become a part of one's regular routine, adherence is greater. Early on, therefore, you should work to integrate CF therapies into your daily routine. Therapies will then become habit and easier to perform. They will also be seen less as a burden, but rather be seen as just "a part of life."
- Foster positive parent-child interactions - Try and reduce the conflict and struggles associated with therapies. Avoid threats or punishment. Provide positive reinforcement for cooperation, independence, and efforts to improve adherence.
- Enlist a support person - All of us do better when we receive support and/or encouragement. Family and friends can provide important support and back-up when assistance is needed to perform prescribed therapies. Parents should not overlook the role that they play in encouraging their children. Praise children's efforts in performing therapies independently. Praise their efforts to perform treatments on a more regular basis.
- Utilize behavior management / modification - Contracts outlining treatment expectations and rewards may be an effective way to improve adherence for older children and/or adolescents. These contracts should be developed with the child/adolescent, parents, and the CF team.
- See the CF Team regularly - Regular contact with the CF team is important to highlight improvements in health outcomes, reinforce the rationale and importance of therapies, discuss adherence problems or difficulties, explore alternatives, and adjust the plan of care as needed. All CF patients should make at least quarterly visits to their CF Center.
- Involve children and adolescents in their care and decisions - In young children, adherence to therapies is the responsibility of parents. As children get to school-age, they should begin to share in this responsibility. Research has shown that children need to progress gradually into assuming more responsibility for their health behaviors if this transition is to be successful. Don't wait until adolescence to "hand it over" all at once. Research has also shown that parents should stay involved to provide guidance, assistance, and back-up.
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!