CF Heroes in Action: Kathy Sabadosa
For nearly a decade, Kathy Sabadosa, M.P.H., Quality Improvement Project Manager at the Cystic Fibrosis Foundation, has been a champion in the fight against CF through her work and in her own life, too.
What first brought you to the CF cause?
I joined the fight against CF as a parent. When my 12-year-old son Jack was born, I had no idea what the disease was. I first turned to the CF Foundation for help finding the best physician, and the CF Foundation and Jack’s care team were great resources for me to learn more.
How did you come to work for the CF Foundation?
My education and career are centered on public health, specifically in guidelines and standards for care. In 2003, I was hired by the CF Foundation to take on quality improvement work around the country. I am lucky that I can use my public health background to fulfill something I’m very passionate about – improving care for people with CF.
What is “quality improvement” and how is it implemented at a care center?
The CF Foundation’s Quality Improvement Initiative is tasked with improving care for all people CF. The fundamental core of quality improvement is the relationship between CF healthcare professionals and the people with CF and their families who receive CF care. When that relationship is strengthened, and we apply evidence-based medicine, we see quality of care improve.
Can you share a real-life example of quality improvement in action at a care center?
Absolutely. One of the CF Foundation's quality improvement initiatives was to improve nutritional and body mass index (BMI) measures for people with CF, and we have seen steady improvement across the network over the past decade.
The CF Foundation developed standardized care guidelines which included routine visits with a dietician to make sure that patients were taking the correct amount of enzymes, following their supplemental feedings, and maintaining a high calorie diet. People with CF, working with their care teams and following these guidelines, can often achieve remarkable progress toward nutritional goals in less than a year.
How can someone with CF or their family participate in quality improvement?
CF care centers need feedback from their patients and families about what it’s like to visit the center and what it’s like to be treated there. Quality improvement relies heavily on the patient and family perspective. For example, patients and their families may be asked by the CF healthcare professionals to contribute to a “care plan” to be used to organize care for patients during inpatient stays.
After implementation, patients and families might complete a questionnaire that asks, “Did the care plan make your stay better? Were you able to get your meds on time? Were you able you able to do your therapies when you needed to?” The answers to these questions can really help care centers improve the quality of the care they deliver.
When your son Jack was born in 2000, you were new to motherhood, CF and CF care. How has CF care changed in the past 12 years?
The biggest change I have seen in the past 12 years is the focus on team care, specifically in the involvement of people with CF and their families. Today, CF care teams are actively engaging their patients during clinic visits to help improve the quality of care they receive.
When people with CF and their families take an active role in their treatment, caregivers are better equipped to make treatment decisions and recommendations. In the past 12 years, I’ve seen the partnership between care teams and their patients and families continue to blossom.
What are you most excited about in the field of CF?
I’m excited to see that we have more people with CF living into adulthood. These adults are coming to the table with the ability to make more decisions about their care, to really express what they value in their personal lives and how to make CF fit into that life for them.
In the past, CF was never considered an adult disease, but today, people with CF are living full and productive lives because of all the science and research. I'm just really excited about the possibilities going forward.
What is your dream for the future?
With all the new research and new therapies like KalydecoTM, I feel like we are making tremendous advances in the fight against CF. I see hope in a pill, and that makes me really excited to keep my son and all people with CF as healthy as they can be. My dream is that CF will no longer be such a heavy burden, and people with CF can live long, healthy lives.
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