Rheumatologist's Recipe for Success Focuses on the Basics
The success of the Division of Rheumatology at Connecticut Children’s Medical Center is based upon one simple premise according to its director Lawrence Zemel, MD: customer service.
It’s a concept that Dr. Zemel said he learned about early in life when he was growing up in Brooklyn, NY.
“My dad was a grocer when I was a child and he always greeted all his customers by name, delivered groceries to all the apartments, and did what it whatever it took to provide the best experience for all his customers,” said Dr. Zemel who also is a professor of pediatrics with the University of Connecticut School of Medicine. “It’s a value that he instilled in me that I still hold sacred to this very day.”
Dr. Zemel credits the level of customer service that his staff provides to the dozens of referring providers from across the state for the success of the department. The number of children who seek treatment from Dr. Zemel and fellow pediatric rheumatologist Barbara Edelheit, MD, are up ten percent every year, which translates into about 850 new patients annually.
“The referring providers are our main customers,” said Dr. Zemel. “We take all their calls instantly – even the complicated cases – and they get the service that other institutions just don’t provide to them.”
Connecticut Children’s Division of Rheumatology evaluates children with known or suspected rheumatic diseases including juvenile idiopathic arthritis (JIA), Lyme disease, lupus, undiagnosed musculoskeletal pain, chronic pain syndrome, fever of unknown origin and autoimmune disorders. In addition to treating patients at the Medical Center, Drs. Zemel and Edelheit see patients at several of Connecticut Children’s off-site locations including Shelton, Stamford, New London, Glastonbury, and Dr. Zemel said that he sees patients at his satellites from upstate New York to rural Maine.
Dennis Crean, RN, Connecticut Children’s manager of regional pediatric services, visits referring provider practices throughout the state on a regular basis and said one name always comes up during his meetings – Dr. Larry Zemel.
“When it comes to the referring providers, Dr. Zemel is the best known member of our faculty,” Crean said. “He is an icon at Connecticut Children’s. He is extremely user-friendly to the referring providers, who tell me that he takes any call, at anytime, to help any child.”
But it’s not only the referring providers who give the Division of Rheumatology such high marks; patients and families do as well.
One such patient is Willy Workman, a sophomore basketball player at Amherst College. Workman, a resident of Northampton, Massachusetts, had developed severe hip pain and visited orthopaedic surgeons and rheumatologists throughout Massachusetts and even as far away as Tennessee. In 2008, while Workman was still in high school, one of the specialists who thought Workman had hip damage and not arthritis referred him to Dr. Zemel.
“I looked at Willy’s MRI and could see there was some arthritis affecting the sacroiliac joint,” Dr. Zemel said. “Usually I don’t start with this kind of treatment but I decided to go ahead and treat Willy with biologics.”
The biologic that Dr. Zemel decided to treat Workman with is known as Humira, which is used to reduce the signs and symptoms of severe arthritis in adults and consists of an injection every two weeks. Workman, a promising young basketball star, already missed his senior year of high school due to the hip pain and was returning for his fifth year at Deerfield Academy in Massachusetts. Shortly after Workman returned to the hardwood, Dr. Zemel went to see him play a game at Westminster School in Simsbury.
“You wouldn’t think that he ever had arthritis,” Dr. Zemel said of Workman who was soon offered a spot on the Amherst College basketball team following graduation.
“It’s because of Dr. Zemel that I’m able to play to basketball,” said Workman, who has to take bi-weekly injections for his arthritis. “He’s always been there for me.”
Workman was an example of a patient who had a passion that has been interrupted by arthritis. Dr. Zemel said that his team will do everything they can to help a patient continue to follow his or her passion, despite what is often a debilitating disease.
“Children with JIA have no control over their illness; it’s not their fault that this affects them,” Dr. Zemel said. “Any passion they have – whether it’s a sport or a hobby – gives them balance and something they can be in charge of,” Dr. Zemel said.
Dr. Zemel is now in the process of transitioning Workman over to an adult rheumatologist, but admitted that he is being very careful and wants to find someone who understands Workman’s need to play basketball.
“Our goal with our patients during treatment is to keep things as normal as possible for them. I just cannot emphasize that enough,” Dr. Zemel said.
Connecticut Children’s Receives National EPA Award in Asthma Management
Connecticut Children's efforts to improve
asthma management and outcomes for
children. Recognized as a national expert in
the subject, her work was instrumental in
Connecticut Children's recently being
recognized with an EPA National Environment
Connecticut Children’s national profile was raised when the Medical Center was selected to receive the U.S. Environmental Protection Agency’s (EPA) 2012 National Environmental Leadership Award in Asthma Management for the Medical Center’s exemplary efforts to deliver high-quality asthma care that includes environmental controls.
The award honors 14 years of dedicated work, led by Michelle Cloutier, MD, Director of Connecticut Children’s Asthma Center, for improving asthma management and outcomes for children. Connecticut Children’s Easy Breathing program, created by Dr. Cloutier, enrolled its 100,000th child in the program in 2011.
Connecticut Children’s was one of only four programs in the country to receive this prestigious award this year. Award winners are recognized for demonstrating that comprehensive asthma care with a strong environmental component can dramatically improve health outcomes for people with asthma.
Asthma prevalence is higher in Connecticut than in the United States as a whole, and it appears to be on the rise. Approximately 86,000 children (10.5 percent) in Connecticut report a current diagnosis of asthma (Asthma in Connecticut 2008: A Surveillance Report).
“EPA is recognizing Connecticut Children’s Medical Center for their outstanding efforts to reduce the burden of asthma for families in their communities,” said Mike Flynn, Director of EPA’s Office of Radiation and Indoor Air. “This program is achieving positive environmental and health outcomes, and EPA applauds their innovation and dedication to controlling asthma.”
Pediatrician Hopes Genetics Will Help Children Breathe a Little Easier
Improving the treatment of children with asthma through the study of genetics is a research goal of Christopher Carroll, MD, MS.
Dr. Carroll, a pediatric intensivist in the Division of Critical Care at Connecticut Children’s Medical Center, said asthma is the number one diagnosis for children admitted to the Pediatric Intensive Care Unit. Through his research, Dr. Carroll hopes to identify children who are at risk for severe asthma attacks, and examine if genetics affect how children respond to specific therapies.
“Even children with mild baseline asthma can have severe attacks that require hospitalization or ICU admission,” said Dr. Carroll who also is an associate professor of pediatrics with the University of Connecticut School of Medicine. “However at this time we cannot accurately predict the children who are at risk for developing these severe episodes.”
Dr. Carroll began his asthma study in 2005 with the generous support of the University of Connecticut Health Center General Clinical Research Center. The study involves collecting DNA samples from children who are admitted to the PICU with severe asthma. He has been collaborating with the Medical Center’s Division of Pulmonary Medicine and its director Craig Schramm, MD. Dr. Carroll also examined how children responded to the standard therapies used to treat their asthma. Between 40 and 50 children are admitted to the PICU every year with severe asthma and of those, approximately seven out of 10 children need to be intubated.
“Asthma is a significant problem in the critical care setting,” Dr. Carroll said. “And there is not a lot of research in the literature regarding the role that genetics play in this population.”
Through this research, Dr. Carroll wants to be able to target therapy to a specific child thus improving clinical care, shortening durations of illness and reducing side effects from ineffective therapies. Some of the preliminary data from his studies have been published in journals of the American Academy of Pediatrics and the American College of Chest Physicians
“Basically what we’re finding is that if a child is not responding to one medication we should just try another,” Dr. Carroll said.
Dr. Carroll said asthma is most prevalent in the fall and spring; fall, because of back-to-school infections, and spring, because of the high number of allergens such as pollen. The average length of stay for children with asthma in the PICU is three to four days and the current fatality rate is zero. Since the study began, data has been collected from more than 100 children thanks to the cooperation of their parents.
“Although the data we collect will not immediately benefit their children, the parents I’ve spoken to are very eager to enroll their child in this study because they know our findings will benefit children in the future,” Dr. Carroll said.
There are two phases to Dr. Carroll’s study. Phase 1 – which is beginning to wind down – involves the collection and processing of the data; and Phase 2 – which includes extending the study outside of the PICU and adjusting the therapies being administered to the patients.
There are several reasons why Dr. Carroll chose to research the role that genetic markers play in children with asthma. Some of them include the dozens of children admitted to the PICU with asthma as well as the lack of studies available. But he has personal reasons as well.
“I have a son with asthma and as a physician, I just simply want to improve the care for every child suffering from asthma,” he said.
Connecticut Children’s Takes the Lead in Pediatric IBD Research
Inflammatory Bowel Disease (IBD) affects more than one million adults and children in the United States alone. Twenty-five to 30 percent of all new cases are in the pediatric population — and the problem is growing. “We know that poorly treated pediatric IBD leads to significant and severe gastrointestinal symptoms, growth failure, hospitalizations, surgery and impaired quality of life. We need to change that,” says Jeffrey Hyams, MD, head of Connecticut Children’s Digestive Diseases, Hepatology & Nutrition division and director of the Center for Pediatric Inflammatory Bowel Disease.
In 2002, Dr. Hyams founded the Pediatric Inflammatory Bowel Disease Collaborative Research Group. This group includes 22 pediatric centers across North America. Dr Hyams explains, “The main focus of the Collaborative Research Group is to examine data on newly diagnosed IBD (ulcerative colitis and Crohn’s disease) in patients younger than 16. We want to describe the natural history of the disease with both clinical and social outcomes. That means, we are not just interested in how our young patients are progressing in the treatment of the disease, but also how treatment is affecting the child’s quality of life.” More than 1,300 children have been entered into the registry since 2002, and 1,000 of them are still active in the program.
True to its name, the Pediatric IBD Collaborative Research Group has become a forum for cooperative clinical research. In just seven years, it has been responsible for more than 50 presentations at national and international medical meetings and 15 peer-reviewed publications in scientific journals. In addition, a major five-year study, funded by the Crohn’s and Colitis Foundation of America, is now underway. Connecticut Children’s is one of seven pediatric hospitals initially involved in the study, which will expand to 20 pediatric hospitals over the next two years. The purpose of the study is to use genetic and other markers to help determine, at the time of diagnosis, how the disease will progress in each child. Will the disease progress aggressively or behave more benignly? How will the child respond to medications?
“Diagnosing IBD is not the problem. The difficulty is assessing the risk vs. benefit to the patient for new and emerging therapies,” said Dr. Hyams. There are many new and astonishingly effective treatments which have become available in the last few years. The most dramatic is the advancement in biological therapy. This involves the administration of monoclonal antibodies, or proteins directed against the inflammatory response in the intestines. The treatment is designed to either neutralize the proteins that cause inflammation or help destroy the cells which produce inflammatory proteins. Dr. Hyams continues, “This is such an exciting time in this field of medicine. Our options for treatment have grown from just three 20 years ago to more than 20 today. But because the latest and most promising treatments focus on the patient’s immune system, there are potentially side effects, some of which can be quite serious. So we want to understand which is the best course and what are the consequences for the patient 10 or 20 years from now.”
As much as treatment has advanced dramatically in the last few years, the incidence of IBD continues to grow. Dr. Hyams adds, “Connecticut is a hotbed of IBD. We used to see 40 new patients a year for IBD. Now we see 80-100 new patients each year. We believe this is reflective of real growth in the disease, not simply because of greater awareness or public access to treatment. A possible explanation is something called the Hygiene Hypothesis. The theory is that improved cleanliness actually creates new problems in ways we don’t yet understand. For instance, in third world countries where children are often raised in filth, there is no IBD. But in developed countries or in countries that are beginning to establish more effective public hygiene, IBD cases appear. Don’t get me wrong, I’m not in favor of our children growing up with parasites, but we continue to explore the potential relationship between hygiene and IBD.”
Dr. Hyams concludes, “As a medical student, I did not expect to work in this discipline. I remember treating a boy with Crohn’s Disease when I was a resident at Boston Children’s Hospital. This was the late-1970s, and we had very few treatment options. In fact, there were very few pediatric gastroenterologists anywhere in the country. When I came to Connecticut 28 years ago, I was the department. But the field has since matured and the Center for IBD at Connecticut Children’s is now one of the premier programs in the Northeast. In fact, in the spring of 2008, U.S. News & World Report ranked Connecticut Children’s Division of Digestive Diseases, Hepatology & Nutrition among the top 30 programs in the country, with a top 10 reputation among its peers.* This was a tribute to all the physicians, nurses, nutritionists, and support staff in the program. We are very proud of our work and very excited about the future.”
*In conjunction with the national Association of Children’s Hospitals and Related Institutions, 143 hospitals were invited to complete a detailed survey for the annual edition of U.S. News & World Report that lists America’s best children’s hospitals. The basis for all the rankings is a blend of reputation, outcome, and care-related measures such as volume, nursing and credentialing.