Although there are many effective treatments for cystic fibrosis, people living with the disease often struggle to balance their lives with managing their daily care.
The average CF treatment regimen can take up to two hours or more per day. Financial, social, and psychological issues make it even more difficult for people with CF to maintain their prescribed treatment plan. Recent
research has shown that consistent management of a daily treatment plan is crucial for better health; it is
associated with better lung function, fewer pulmonary flare-ups, and even lower healthcare costs. Yet, the heavy treatment burden for people with CF poses significant challenges.
Recognizing that these barriers can prevent people from fully benefiting from their prescribed therapies, the Cystic Fibrosis Foundation is addressing the complexities of adherence with a multi-pronged approach. To help people with CF and their families
better sustain daily care regimens, the CF Foundation created Partnerships for Sustaining Daily Care (PSDC), a strategic initiative to support CF care by encouraging dialogue between care teams and people with CF and their families, to identify barriers
to daily care and find solutions together.
The Success with Therapies Research Consortium (STRC) is a part of this initiative and aims to test interventions that are effective, practical, measurable, scalable, and sustainable. Formed in 2014, it is co-chaired by Kristin Riekert, Ph.D., from Johns
Hopkins University, and Gregory Sawicki, M.D., M.P.H., from Boston Children's Hospital. Drs. Riekert and Sawicki lead a group of investigators to identify innovative ways to support people with CF in managing their disease. STRC investigators have
diverse backgrounds in medicine, psychology, clinical research, and health economics, and they represent adult and pediatric CF programs throughout the United States. They are:
- Boston Children's Hospital
- The Children's Hospital of Alabama / University of Alabama at Birmingham
- Cincinnati Children's Hospital Medical Center
- Johns Hopkins University
- National Jewish Health
- Northwestern University Chicago Campus
- The Regents of the University of Michigan
- Stanford University Medical Center
- St. Louis Children’s Hospital
- University of Arizona, Tucson
- University of Colorado, Denver
- University of Kansas Medical Center
- University of Texas Southwestern / Children’s Health
- Virginia Commonwealth University
- West Virginia University
- Women and Children's Hospital of Buffalo
People with CF, their families, and their care teams are involved at all levels of the STRC. They participate in consortium activities, such as consulting on research questions and study design. They also review study protocols. The largest influence
from the CF community comes through the Steering Committee. The Steering Committee oversees and governs STRC operations and studies. Currently, there are two adults with CF and one mom of a 23-year-old with CF serving on the Steering Committee. These
Committee members provide real-world insight into STRC functions.
The STRC investigators are supported by two core centers:
By developing and validating interventions and tools that work in the real world, these solutions are more likely to become a part of a care team's regular clinical practice and integrated into the daily care routines of people with CF and their families
without adding to their treatment burden. As part of its process, the STRC is developing a standard set of measures, which will enable investigators to evaluate a single study, as well as reliably compare between studies.
The current STRC studies are:
Barriers Screening Tools: This study seeks to identify adherence barriers at the individual and systems levels, and then to create and validate standardized tools to help people with CF and clinicians identify these barriers to then offer
interventions that are tailored to the person's unique strengths and challenges.
Web-Based Nutrition Tool: In the first of this two-phased study, feedback from care teams and parents of children with CF will inform adaptations to an existing, in-person behavioral and educational intervention. The resulting web-based
tool will be integrated into clinical care so that care teams and parents can collaboratively manage nutrition for children with CF. The second phase is a randomized
study in which use of the web-based tool will be compared to the current standard of care.
Video-Based Tele-Coaching: This study seeks to use patient, parent, and care team feedback to design a novel, patient-centered, and practical tele-coaching intervention to enhance adherence in adolescents and young adults with CF.
Medication Planning Mobile App: This study will evaluate the effectiveness of MedActionPlan® (MAP). MAP is a personalized, web-based mobile application that encourages self-management by providing adherence reminders, reinforcing
education about therapies, and allowing people with CF to self-monitor their goals in lung function and weight tracking.Currently, requests for proposals are open only to STRC investigators. If you are interested in learning more, please contact STRC@cff.org.
***
Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or the information, products, or services contained therein.
Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
FDA-approved drug information is available at www.dailymed.nlm.nih.gov/dailymed.