Cystic Fibrosis Overview
Of the Present
We follow approximately 240 adult patients that live in Utah, Idaho, Nevada, Wyoming, Montana, Colorado. The center's catchment area encompasses 10 percent of the geographic boundary of the continental United States. Our patient population doubled in the last 10 years and will double again within 10 years.
Currently, we provide 640 multidisciplinary outpatient visits per year. Each patient visit is with a physician, nurse, pharmacist, respiratory therapist, social worker and dietician. We admit 4 patients per week and have an average inpatient census of 8.5 per day.
Of the Future
We are leaders in developing the future of Cystic Fibrosis (CF) care. To maximize the impact of rapid advances in CF specific medications, we added a Doctor of Pharmacology to our care team more than 15 years ago. The US CF Foundation recognizes the success of this program and actively encourages this innovation at all other accredited care centers.
Locally, our successes with new treatments mean that patients live longer and better, and that our center grows in size and needs. To respond to the growth, we plan to recruit two new physicians and provide additional high-level training for all team members. We are seeking support to:
- Navigate clinic growth
- Anticipate future patient needs
- Expand high quality care
- Maintain our tradition of innovation
Of the Past
Since 1964, the Intermountain Adult Cystic Fibrosis (CF) Center at the University of Utah has been delivering quality care to patients throughout the Mountain West. Our Center has had three Directors, including Bruce Marshall, MD, now Vice President for Clinical Affairs at the Cystic Fibrosis Foundation.
Under Dr. Marshall, our center became the first in the United States to implement a quality improvement program which has since been expanded to all United States CF Centers. Centers in Europe and the South Pacific are now emulating the US program. Under the leadership of our current Director, Ted Liou, MD, our center was honored with the CF Foundation Award for Quality Improvement in 2008 for work leading to better health outcomes for patients with CF. Our providers and staff are dedicated and invested to our patients to provide the best possible outcomes.
Of the Present
The CF Center serves 10 percent of the continental U.S. providing state-of-the art care. We are proud to be part of the University of Utah Health which leads the nation for providing quality care.
The University of Utah Health:
- Finished in the Top 10 in Quality six years in a row*.
- Posted patient reviews online first of all Health Systems
- According to Press Ganey's assessment of patient satisfaction nationally
- 26 percent of our providers rank in the top 1 percent
- 50 percent of our providers rank in the top 10 percent
- We are designing care to better fit patients' lives. We are
- moving primary and specialty care into neighborhoods
- reducing wait times
- staying open later
- making newborn house calls
- Using latest technology to deliver subspecialty care in 11 areas through the Intermountain West
- Provides the highest quality health care at the lowest cost in the country
*University Health System Consortium
Of the Future
We are building a future around our patients.
- Practice and originate state-of-of-the-art care (The CF Team)
- Fit care around your life (Journeys to care)
- Sustain and bolster a CF Community (connections are life)
- Handle the CF nutritional challenges (Kitchen)
- Better integration of inpatient and outpatient care (CF Center)
Of the Present
The University of Utah CF Center sees about 1 percent of Cystic Fibrosis (CF) patients in the United States. However, the catchment area is approximately 10 percent of the total landmass of the United States. Currently, 20 percent of our patients drive greater than two hours to come to the University of Utah and some patients drive 4-6 hours each way for appointments. The gas money, lost work and travel housing drain patient finances.
Because of the economic strain, many patients elect to reduce or discontinue essential services provided during visits. We are responding to these obstacles by planning a tel-health center.
Of the Future
A tele-health center for CF allows remote visits, with low travel costs and hazards. We will continue to see patients at the University to maintain the impact of human touch but expand our ability to help patients at home. The center would will provide some quarterly follow-up visits for established patients. For patients just home from an inpatient stay, a quick telemedicine visit will ensure that all discharge plans are in place and will prevent re-admissions. A tele-health center will amplify our ability to care for patients near and far by allowing frequent, quick contacts to fine-tune care, improve daily quality of life and avoid hospitalizations.
Of the Present
Dr. Ted Liou is Facebook friends with more than one quarter of the clinic population. Each of the patients requested the friendship. Patients use the connection to ask questions in the public space about new treatments and news from the Cystic Fibrosis (CF) Center. In private conversations, patients get personalized advice from Dr. Liou, arrange for special care and sometimes just get encouragement. In several instances, Dr. Liou has intervened in dangerous situations presented by patients to their Facebook friends and prevented harm. One the other hand, patients sometimes give encouragement and support to Dr. Liou and the CF team. Unfortunately, Facebook is a commercial enterprise so that online discussions can sometimes attract intrusive advertising or unwanted attention from other Facebook members that do not understand the rigors of having CF. And, of course, Dr. Liou’s current participation is only a fraction of time that patients are online, asking questions, revealing needs and sometimes experiencing non-obvious but urgent and important health risks.
Of the Future
A private, invitation only, page for CF patients and their families would enable daily interaction with the CF Center in a protected space. Donor-supported CF team members:
- Manage and monitor the conversation online
- Provide quick responses to questions and concerns
- Listen and provide a caring voice
- Guide patients wishing to try new treatments
- Coordinate refills and appointments
This site creates a new and natural avenue for patients to speak up and establishes another form of communication. Sympathetically listening to patient discussions might help physicians or other clinic staff respond to needs even before patients ask or even realize a need.
Of the Present
Because of Cystic Fibrosis (CF), patients face demanding nutritional challenges. The typical patient with pancreatic insufficiency must prepare and eat 3,000 to 5,000 calories a day to maintain weight. This many calories:
- Requires effort, time and money to obtain and prepare the food
- Robs patients of the ability to savor well-cooked meals,
- Creates unexpected social barriers
- Parents of patients and adult patients with families often cook two meals at a time, one high calorie for the patient and one regular calorie for everyone else
- Even at a family table, different meals set patients apart and increase social isolation.
Currently, a dietitian meets with patients and provides guidance about foods, recipes and nutrition goals. It is the responsibility of the patient to implement the advice.
Of the Future
Our center not only wants to teach patients how to manage their nutritional needs, we want to show them in a fun and interactive way. Imagine a demonstration kitchen where a guest chef could bring a popular recipe picked from his or her restaurant menu. After adaptation for a home kitchen, the chef could teach a patient or a family how to cook the item with an easy branch point that leads to two versions of the dish. This will allow everyone to essentially have the same meal. Using video and social media, we could share the experience with other patients and families. We envision a menu of many dishes specifically designed to help patients and families grappling with CF nutritional needs. We would supplement each video with a short discussion between the dietician, the chef and the patients about the nutrition, ingredients and costs.
It is a victory that so many patients with CF are newly independent young adults; others are newlyweds and may need additional cooking skills. We could use the kitchen as a uniquely well-equipped classroom to teach basic cooking, one-on-one. Our dietitians could use the kitchen to teach important medical tasks like estimating calorie and nutrition content of specific foods or preparing tube feedings or other supplements.
Of the Present
Currently, the University of Utah’s Cystic Fibrosis (CF) Care Center is bursting at the seams. It is difficult to find enough rooms to see patients. University staff has to be creative to enact the infection control measures needed to protect patients.
Of the Future
We envision multidisciplinary care provided in a facility that facilitates all facets of care. This facility would:
- Provide effortless infectious disease control
- Improve team dynamics
- Accelerate personalized medicine
- Coordinate inpatient and outpatient care
- Encourage patient engagement in research
- Allow training of the next generation of team members
