Approximately 1.4-million people in the United States are affected by inflammatory bowel disease (IBD), a group of chronic diseases of the colon and small intestine generally falling into the categories of ulcerative colitis and Crohn's disease. The illnesses tend to be diagnosed in childhood or young adulthood, and are characterized by periods of remission followed by flare-ups of symptoms that can include abdominal pain and cramping, diarrhea, rectal bleeding, vomiting and weight loss.
"On the outside, you wouldn't know that someone has IBD," says Daniel Hommes, M.D., Ph.D., head of UCLA's Center for Inflammatory Bowel Diseases. "But on the inside, it's very destructive. A significant number of patients require frequent toilet visits and have problems with pain. Careers and relationships can be affected. The drugs that are available come with side effects and are ineffective in about 20 percent of patients, who end up needing experimental therapy or surgery."
Dr. Hommes believes the traditional approach to assisting patients with IBD has left much to be desired, and so the Center is implementing a new approach to chronic-disease management. Playing off the concepts of intelligence quotient (IQ) and emotional intelligence quotient (EQ), the center is tracking each patient's value quotient (VQ), a measure that incorporates the annual burden of the patient's disease (including factors such as disease activity, complications, medication side effects and hospitalizations); quality of life; and work productivity. Each year, an individual patient's VQ will be analyzed by the center's professional staff to determine factors that influence the score and to devise a plan for the year ahead. "It is our mission to annually improve each individual VQ," Dr. Hommes says.
The center's approach to controlling patients' disease is two-pronged. The first involves the development of new treatments. Patients who don't improve with standard medications can participate in state-of-the-art IBD research through a clinical-trials program and a stem-cell-treatment program. Dr. Hommes has been a leader in both autologous hematopoietic stem-cell transplantation (using patients' own stem cells, drawn from blood) and mesenchymal-stem-cell therapy - using cells with the capability of differentiating into a variety of cell types as a strategy for controlling inflammation.
The other part of the approach centers around the active role patients play in their care. An online-education program empowers patients by teaching them about the disease, treatments, home care and their individual case. The center is also developing home-care devices, including biochips for clinical testing. To ensure close monitoring of their disease, patients are invited to periodically transmit results of self-administered tests as well as information on their symptoms, quality of life, and work productivity.
Dr. Hommes believes the center's approach can serve as a model for other chronic diseases.David Ziring, M.D., director of the UCLA Pediatric IBD Center - part of the Center for Inflammatory Bowel Diseases - says the value-based approach is also beneficial for children with IBD. "They will enjoy a seamless transition from adolescent to adult care, will be able to participate in groundbreaking clinical trials of new drugs, and for those in whom conventional therapies have failed, will be given the opportunity to participate in new stem-cell-therapy regimens," Dr. Ziring says. "Like Dr. Hommes, I strive to provide holistic care to my patients and their families, including not only maintaining disease remission, but also optimizing quality of life and school performance."
For more information go to: www.gastro.ucla.edu/ibd