Although CF newborn screening (NBS) has been available across the United States since 2010, CF Centers and NBS labs still face challenges in optimizing the process from a positive NBS test to CF diagnosis, dealing with indeterminate results (i.e., CFTR-related metabolic syndrome, CRMS), and optimizing outcomes such as nutrition and family experience. The goal of this short course is to provide CF caregivers with resources and updates on how to optimize the CF NBS process and care of infants diagnosed with CF or CRMS through NBS.Speaker(s):
Knowledge of the pathophysiology of cystic fibrosis is an essential building block to success as a clinical research coordinator. Additionally, understanding the purpose of key outcome measures as they apply to clinical research studies can enhance the ability to accomplish tasks effectively. This short course will also address hot topics in cystic fibrosis research including the use of social media, the challenges we face in meeting the needs of all of our sponsors, implementing continuous process improvement into our busy programs and applying practical aspects of the new infection control guidelines in clinical research. This course is appropriate for both the new clinical research coordinator as well as the more seasoned RC.Speaker(s):
The overall goal of this short course is to provide CF care providers with the skills and knowledge necessary to provide optimal treatment of difficult to treat infections through an interactive lecture and case-based format. This short course will address the following therapeutic areas: 1. Methicillin Resistant Staphylococcus 2. Nontuberculous mycobacteria 3. Burkholderia cepacia complex, MDR-Pseudomonas aeruginosa, Achromobacter xylosoxidans, Stenotrophomonas maltophilia. 4. Allergic Bronchopulmonary Aspergillosis.Speaker(s):
Family Resilience and Stress Theories: Practical Interventions When a family member has cystic fibrosis, whether a child or adult, the whole family is affected. Successful adaptation, coping and resiliency are associated with certain family traits and key processes. Medical adherence and transition are also greatly impacted by family dynamics. Helping families build on strengths, mediate risk factors, and learn effective communication and coping skills can help them successfully adjust to changing conditions and needs as they navigate the course of living with CF.
At the end of the course, the student will be able to:
1.Gain and discuss insights about family dynamics, the bidirectional influence of relationships within families, and the impact of developmental transitions and illness on these relationships.
2. Analyze and apply family theories to practice and inform interventions that enhance the quality of parent-child relationships.
3. Describe the contribution of individual differences, such as temperament and coping style, to family interactions and functioning.
4. Identify key principles of effective motivation including ways to avoid and handle resistance to medical requirements.
It is known that anxiety and depression is prevalent throughout the world, with a higher incidence in those individuals with a chronic illness. Currently, an international committee is working to develop Anxiety and Depression Guidelines for all care teams to utilize.Part of the guidelines will be recommendations for treatment which will include Cognitive Behavioral Therapy (CBT). CBT is a known therapeutic intervention that has been successfully used to treat anxiety and depression in a variety of settings. Basic principles of CBT, such as exposure, behavioral activation, or cognitive restructuring will be demonstrated. Modifications of CBT for application with patients with a progressive medical disease will be discussed. This session is intended to assist all members of the interdisciplinary Cystic Fibrosis Care Team to effectively understand and use CBT in the CF Center settings to assist/treat individuals with CF and/or their caregivers. The course is open for all professions involved in the CF team who might be interested to counsel patients and caregivers about opportunities of CBT and to refer patients with CF and comorbid anxiety or depression to adequate treatments.Speaker(s):
This short course, focusing on nutrition, is designed for dietitians/nutritionists and other CF care team members who possess basic experience in CF nutrition and are interested in expanding their knowledge of nutritional concepts and practical applications. Topics covered may include enzymes, tube feeding, vitamins and minerals, pregnancy, transplant, appetite stimulants, diabetes, infant care, and nutrition quality improvement. Information presented will incorporate current guidelines, new research, practical skills, and case studies. Knowledge gained during this course will help improve the quality of nutrition care delivered to CF patients.Speaker(s):
This course will review the prevalence of nonadherence to the components of the CF regimen as well as a critical overview of the pros and cons of different assessment strategies that RTs and PTs can use in clinic. Behavior change models and counseling approaches will be introduced as a means to conceptualize an individual's challenges and strengths and develop a personalized approach to supporting treatment adherence. Interactive discussion and role-play will be used to teach and practice basic counseling skills.Speaker(s):