Survivorship among brain tumor patients is much higher in the U.S. than in other parts of the world.
This reality is something Washington University School of Medicine faculty seek to mitigate through a new initiative called the International Pediatric Neuro-Oncology Tumor Board. Started by Director of Pediatric Neuro-Oncology Mohamed Shebl Abdelbaki, MD, and Pediatric Neuro-oncologist Margaret Shatara, MD, the Tumor Board provides a platform for collaboration with physicians across the globe to diagnose, manage and treat some of the world’s most complex brain tumor cases.
“It’s a platform that provides remote specialty consultation for patients with brain and spinal tumors from different countries around the globe,” says Abdelbaki. “Washington University physicians make up the panel of experts, and in collaboration with physicians from other institutions, we provide formal second opinions on the cases we discuss.”
At virtual monthly meetings, Washington University faculty, along with other international specialists, present and discuss cases and work together to achieve the best outcomes for their patients.
“In this day and age, we have so many resources available that allow us to collaborate virtually,” says Abdelbaki. “We should leverage this network for brain tumor patients worldwide, and contribute to how well they are treated here in St. Louis, the United States, and beyond.”
The International Tumor Board currently includes members from 20 institutions across 12 countries including Poland, Brazil, Chile, Australia, Germany, Egypt, Jordan, Oman, Tunisia, Saudi Arabia, Lebanon and Kuwait.
Recently, in collaboration with world-renowned Washington University Pediatric Neurologist David Gutmann, MD, the Tumor Board initiated a quarterly meeting specific to the treatment of Neurofibromatosis-related tumors, a group of genetic disorders that cause tumors to form on nerve tissue.
“Tumors that include the brain and the spine are complex and require coordinated multidisciplinary teamwork,” says Abdelbaki. The care of a brain tumor patient requires the integrated efforts of many specialties, including neuro-oncology, neurosurgery, radiation oncology, neuro-radiology, neuro-pathology, neurology, endocrinology, and rehabilitation medicine. In most cases, an ophthalmologist, an otolaryngologist, or a dermatologist need to be involved as well.
Often, brain tumor patients in low and middle income countries simply don’t have access to a multi-disciplinary team, and by the time experts in these countries finally do see them, the tumors can have progressed to a point where it’s necessary to seek advice from a wider network.
When a case is presented to the International Tumor Board, specialists discuss patient care from many angles, going over medical history, tumor progression, management, and viable access to medications and treatments. After the initial discussion, board members often follow up with conference calls and patient care meetings.
“We see a lot of cases that would be unusual here in the U.S. because there are certain diseases or cancer predisposition syndromes that are more prevalent in other parts of the world. Patient compliance is also much lower because people have less access to care,” says Shatara. “In the United States, we sometimes get frustrated if a patient has to wait for a few days to be seen after a referral has been made. Whereas, in other countries, a patient may not see a neuro-oncologist until several months after the diagnosis.”
Shatara recalls a case from Tunisia in which a delayed referral affected a patient’s treatment. “This patient didn’t see a neuro-oncologist until three years after she presented with a wide stance and stumbling gait, two huge red flags. Those specialists did their best, but by the time they saw her, the tumor had spread and disseminated,” says Shatara.
This patient’s primary team initiated a non-traditional treatment, and the tumor remained stable for three months. At that point, the case was submitted to the Tumor Board for advice on next steps, and members discussed several options for this patient’s care. “Ultimately, we recommended continuing the non-traditional therapy and closely monitoring with imaging and re-discussion,” says Shatara. This would have been unusual in the U.S., but made the most sense in the context of this case.
In addition to supporting clinical care worldwide, the International Tumor Board provides a forum for research collaboration, and organizes training for international specialists at Washington University.
Abdelbaki has been working to develop more relationships with other institutions to allow for formal collaboration in patient care. Official collaboration has already been established between several Polish institutions and St. Louis Children’s Hospital. This year, two patients traveled from Poland to St. Louis to receive high dose chemotherapy and stem cell treatment in addition to radiation therapy.
Physicians and specialists interested in participating in the International Tumor Board may contact Margaret Shatara, MD, at firstname.lastname@example.org.