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Pulmonology

Network for Change

Pulmonology_CFTN-LA

From his office on the south side of Birmingham, Alabama, pediatric pulmonologist Hector Gutierrez, M.D., shares his passion to help cystic fibrosis (CF) patients around the world. In addition to being director of the University of Alabama at Birmingham (UAB) Division of Pediatric Pulmonology and the Cystic Fibrosis Center at Children’s of Alabama, Gutierrez is also principal investigator of the Cystic Fibrosis Training Network for Latin America (CFTN-LA). He leads a specialized team whose goal is to establish CFTN-LA as a permanent presence in Latin America.

“Unlike the United States, most Latin American countries lack a center network to provide shared information and collaboration to help improve the care of patients. Because of this, they have been at a great disadvantage,” Gutierrez said. “A sustainable training program for CF centers can help improve quality of care, clinical outcomes and life expectancy for Latin American CF patients.”

The CFTN-LA strives to meet the same goals of the CF Foundation, which over the past 60 years has established itself as a global leader in rare disease research and advancement of new CF therapies in the U.S. The network aims to provide high-quality care for thousands of Latin American patients, to establish comprehensive, multidisciplinary CF centers and to address preventive barriers. Gutierrez said the network would open important avenues for future research and drug development.

“Several factors limit the optimal CF delivery of care in these countries,” Gutierrez said. “Whereas diagnostic testing and medications are increasingly available here in the United States, there has been a paucity of expert manpower and a lack of multidisciplinary team approach in Latin America.”

Gutierrez said the CFTN-LA would lay the foundation for a well-integrated infrastructure for CF centers and their teams, with future training efforts led in qualified Latin America centers, ensuring continued growth and sustainability of the network.  Since 2014, Gutierrez has led eight benchmarking visits to Chile to help ensure access to high-quality care and establish the CFTN-LA. In turn, the Santiago, Chile-based Hospital Clínico San Borja Arriaran (HCSBA) CF team, among the partners in this endeavor, visited Birmingham for a two-week training to accelerate the project.

Because the current Latin America healthcare delivery systems do not integrate or share information, patients may change from one system to another without proper follow-up and data acquisition. In addition, some health professionals essential to the CF team work as independent contractors to both public and private systems, resulting in higher costs to insurers and families.

The CF Center at Children’s has proposed establishing a multidisciplinary CF Center in Santiago, Chile, providing care adhering to CF Foundation standards. Collaborative work has led to significant improvement in clinical outcomes and team expertise for a number of hospitals in Chile.  In 2015, the HCSBA CF team was approached by five other Santiago-based hospitals that are now part of the project as affiliate hospitals. After the incorporation of the affiliate hospitals, the HCSBA CF Center renamed itself Regional CF Center Santiago.

“This project started with one center, one hospital, and other hospitals in Santiago started to get interested,” Gutierrez said. “They joined by participating in our visits in Chile, and we provided similar information and feedback, but the first center (HCSBA) that came to Birmingham became their leader and the point group for the others to learn from them.”

Efforts thus far have shown a marked improvement in nutritional outcomes, lung function and microbiology among CF patients cared for by the participating hospitals in Chile, Gutierrez said.

“We have been in discussion for two years with the government officials in Chile and other Latin American countries to work toward developing a solid CF network similar to what we have in the United States,” Gutierrez said. “We have explained the benefits, however, the structure of care deliveries, health care benefits, et cetera are different. Although we have started small, we feel we are making progress and hope to continue to do so in the years to come.”

A mentorship by high-performing, U.S.-based CF teams, namely Children’s, UAB and the Baylor College of Medicine in Houston, plans to expand and train Latin America-based CF teams in Chile, Mexico and Uruguay. The mentorship would continue the development of an effective, adaptable and scalable training program for both mentors and trainees, and adapt transformative care management to local resources, culture, customers and healthcare delivery.

Pulmonary Clinics
Learn more about some specialized pulmonary services at Children’s of Alabama.

Nephrology

Telenephrology: Bringing the Nephrologist to the Patient—Virtually

Nephrology_Telemedicine

With only six pediatric nephrologists in the state, families must often drive hundreds of miles—and many times stay overnight—for appointments with Children’s of Alabama physicians. In fact, 48 percent of the hospital’s transplantation patients come from more than 100 miles for each appointment, and 32 percent  from more than 200 miles, said Daniel Feig, M.D., Ph.D., who directs the pediatric nephrology and renal transplantation program.

“It’s more than a slight challenge to get here,” Feig said.  “It entails missed school and work and the cost of getting back and forth.”

And that, in turn, can compromise the quality of care or even lead to missed opportunities for care.

Now, however, families can “see” a doctor just a few miles from home thanks to the practice’s new telenephrology program. The program, which began in June, builds on the success of the adult telenephrology program for dialysis patients started by Director of Telehealth Eric L. Wallace, M.D. in collaboration with the Alabama Department of Public Health. It involves teaming with the public health department in each of the state’s 67 counties to see patients remotely.

“So all families are within 25 miles of a site of care,” said Feig.

Families Appreciate the Convenience

To date, seven patients have been seen a total of 16 times remotely.

“Every family said they would like to continue the remote visits,” Feig said.

The primary difference in the visits, of course, is that the patient and doctor are not in the same place. Other than that, nearly everything else is the same. Lab and radiology tests are obtained before the visit so the doctor can evaluate them prior to meeting; a high-resolution camera enables the physician to examine the skin, mouth and ears; and Bluetooth technology allows for a heart and lung exam. A nurse in the room facilitates the exam.

“What we lose is the physical feel of the belly exam or the pulse,” Feig said.

This is why patients chosen for telehealth are those who are most amenable to visual exam evaluations.

Still, nephrologists deliberately started the program with renal transplant patients—“the most complex patients possible, said Feig. These patients see a multitude of providers when they come to the on-site clinic, including the pharmacist, child life and social workers, the transplant nurse and transplant counselor – all of whom participate in the virtual visit.

“If we can manage the most complex patients through telemedicine, we can leverage the scale to those who need less in the way of specific practitioners involved in the visit,” Feig said.

Moving forward, Feig and Wallace said they plan to significantly increase the number of patients seen, including first-time patients. Challenges include not only the physical infrastructure, but training staff to schedule telehealth visits versus inpatient visits.

“A true telemedicine clinic is the goal,” Feig said.

Wallace agreed.

“For many in Alabama, the reality is that it is telehealth versus no care,” Wallace said.

For instance, 17 percent of families in Wilcox County do not own vehicles.

“A big part of telehealth is reaching people who would never have been able to be seen,” Wallace said.

Nephrology Research
Learn more about research conducted by Daniel Feig, M.D., Ph.D., and other nephrology specialists at https://www.childrensal.org/nephrologyresearch.

Neonatology

Joined at the Hip

Neonatology_Hip

The sky bridges connecting the University of Alabama at Birmingham (UAB) Women & Infants Center and Children’s of Alabama provide more than a means of travel from point A to B. For the UAB/Children’s Division of Neonatology, the sky bridges not only facilitate seamless clinical care, but also seamless research collaborations.

“It’s a tremendous benefit,” said Trent Tipple, M.D., UAB associate professor of pediatrics, director of neonatology faculty development and co-director of the Neonatal-Perinatal Medicine Fellowship Training Program. “The integration is one that just makes sense. It eliminates a lot of barriers that can make research frustrating and allows one to focus on designing the best study with the necessary personnel; to really think about how to execute a study rather than whether a study can be done.”

“It’s one of the unique features here. UAB’s Regional Neonatal Intensive Care Unit and Children’s NICU are literally joined at the hip,” said Namasivayam Ambalavanan, M.D., UAB professor of pediatrics, neonatology division co-director, director of the Translational Research in Normal & Disordered Development (TReNDD) Program at UAB and principal investigator of the UAB Research Center. “This makes clinical care a lot better and research also improves.”

Carl “Tim” Coghill, M.D., UAB professor of pediatrics and medical director of Children’s NICU, said the physical proximity not only serves as a benefit to clinicians and researchers, but also patient families facing what can be a stressful experience.

“Many freestanding children’s hospitals are blocks away from their associated delivery units, making it difficult for consultants to see the infants without transfer away from the mother,” Coghill said. “Children’s of Alabama used to be two blocks from UAB with no connecting bridge. With the present bridge, the closest NICU bed at UAB is only 75 feet from the nearest NICU bed at Children’s, which is closer than some beds are to each other in other respective units.”

Coghill continued, “The ability to stay with a nursing staff that you know and a hospital that you are familiar with while continuing to get the best care is a confidence builder, and delivering great care is only good enough if it is perceived to be great care by the patients and families as well.”

As a founding member of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network (NRN), part of the National Institutes of Health (NIH), UAB/Children’s is consistently one of the top centers in developing, leading, enrolling and analyzing randomized controlled trials and clinical studies. For example, neonatology division members have led three major innovative NRN studies – the SAVE Factorial Trial, the Cytokine Study and the SUPPORT Factorial Trial. A fourth trial led by UAB/Children’s neonatologists testing the effects of caffeine late in the neonatal course and at home to shorten hospitalization and decrease apparent life threatening events began enrollment this year.

In its more than 30 years of existence, the NRN has defined the standards of multi-institutional collaborative research resulting in increased survival and decreased morbidity rates of extremely low birth weight infants and other critically ill infants in the U.S. Wally Carlo, M.D., Edwin M. Dixon Endowed Chair in Neonatology and neonatology division co-director, and Ambalavanan are principal investigators for the NRN and have led nationwide studies on ventilator care, antenatal steroids, chronic lung disease and neurodevelopment outcomes. A study in the NRN published in the New England Journal of Medicine reported that neonatal mortality has been decreased over the last 10 years, including decreases in almost all specific causes of neonatal mortality, because of improvements in care implemented in the NRN centers.

In addition, UAB/Children’s is the only facility in the U.S. to be awarded grants in all three perinatal networks from the NICHD – the NRN, the Maternal-Fetal Medicine Units Network and the Global Network for Women’s and Children’s Health Research. For more than two decades, these networks have awarded UAB/Children’s more than $20 million to fund research for pregnant women and babies. The most recent grants, awarded in 2016, will bring a total $1.1 million per year through 2021.

Under the Global Network, UAB/Children’s researchers have led seminal investigations of resuscitation and essential newborn care in 100 communities in six countries, which included almost 200,000 infants. These trials established the effectiveness of these interventions in reducing stillbirths and neonatal mortality, and led to worldwide implementation of training, including the globally-implemented Helping Babies Breathe Program and the Essential Care for Every Baby Program launched in 2014. The programs have been introduced in more than 75 countries to save babies’ lives at birth, with the potential to reduce infant deaths soon after birth by 1 million.

“It should save a million lives every single year at almost no cost,” Carlo said of the programs. “It will save the most lives in the world.”

Division of Neonatology
Learn more about the Division of Neonatology, including specialty clinics and faculty bios, at https://www.childrensal.org/neonatology.

Hematology and Oncology

The Institute for Cancer Outcomes and Survivorship Focuses on Key Quality-of-Life Issues

HemOnc_ICOS

As more patients—adult and pediatric—become long-term cancer survivors, it becomes ever more imperative to identify ways to prevent, or at least manage, long-term complications from the cancer and its treatment.

Just how to do that forms the cornerstone of the research conducted at the University of Alabama at Birmingham (UAB) School of Medicine through its Institute for Cancer Outcomes and Survivorship (ICOS). “We are interested in developing a strong base of researchers who are focused on studying cancer outcomes long-term and identifying the issues cancer survivors face,” said ICOS Director Smita Bhatia, M.D., MPH. “We are continually striving to improve the quality of life of cancer survivors.”

Diverse Group

A diverse group of researchers from UAB participates in ICOS, including epidemiologists, physician scientists, behavioral scientists, molecular biologists and nurse scientists. They come from numerous departments, including radiation oncology, medical and pediatric oncology, and surgical oncology. Within ICOS, they have access to a state-of-the-art infrastructure that supports outcomes research, thus facilitating the transitional research that is integral to the Institute’s mission.

“The overarching goal of the ICOS is to conduct cutting-edge research in cancer outcomes across the age spectrum,” Bhatia said.

Since its founding in 2015, Institute researchers have received more than $10 million in grants from the National Institutes of Health and private foundations, and published more than 250 papers in peer-reviewed journals, a third of them high-impact journals.

Asking the Right Questions

All research studies start with asking the questions that no one has asked before, Bhatia said. “Questions are definitely going to move the field forward and make people’s lives better,” she noted.

For instance, a current study is examining long-term morbidity in pediatric cancer survivors, 60 percent of whom will eventually develop complications related to their cancer treatment. “We are systematically studying the molecular basis of these long-term complications,” Bhatia said.

Questions include: Why does radiation increase the risk of other cancers? How does a child’s DNA make them more prone to radiation-related cancers? Are there ways to predict children who are more likely to develop  treatment-related conditions and find alternative treatments to attack their cancer?

The Institute is also studying adherence to oral chemotherapy. “We find that children with acute lymphoblastic leukemia (ALL) often don’t take their medications as directed,” increasing their risk of relapse, Bhatia said. “We are now testing strategies to improve adherence to oral chemotherapy.”

To explore the impact of radiation and chemotherapy on the developing brain, researchers are using MRI to identify cellular signs of “chemo brain” and looking for ways to protect the brain during treatment.

“When a new patient comes in with cancer, the first thing we have to do is get rid of that cancer,” Bhatia said. That typically means using agents known to increase the risk of neurocognitive deficits. “So we have to develop methods to reverse or halt these complications.”

Several other research questions are under investigation, including ways to:

  • Expand the HPV vaccination rates in childhood cancer survivors
  • Determine the burden of morbidity older cancer survivors experience
  • Understand the best way to treat older patients with cancer without causing undue toxicity
  • Improve end-of-life experiences for cancer patients


Understanding ICOS Research
Learn more about ICOS research and watch an interview with Smita Bhatia, M.D., MPH.