Nearly 800 experts from 15 countries gathered on the Northwestern Evanston campus July 12-14 for the largest conference on dysphagia, or swallowing disorders. Known as the Charleston Swallowing Conference due to its past location, the event is the field’s premier venue to raise awareness and share the latest breakthroughs in research and treatment for this pervasive but misunderstood condition.
“Originally, as researchers, we tended to hang with one another and hear one another’s science, but not everyone publishes their literature in one place,” says Bonnie Martin-Harris, the Associate Dean for Academic Affairs and the Alice Gabrielle Twight Professor at the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders. “I was always passionate about giving clinicians the access they need to new discoveries, and specialty knowledge necessary to effectively treat the patient population and optimize outcomes.”
Swallowing disorders, or dysphagia, aren’t well known outside these specialized medical communities, yet they affect a disproportionately large swath of the American population—roughly one in 25 adults per year, according to the American Speech-Language-Hearing Association, but those numbers don’t include children and are still believed to be an underestimate.
Dysphagia is a common side effect of stroke, Parkinson’s Disease, and ALS, but is also found in newborn babies and head and neck cancer patients both during and after curative treatments. It can lead to a range of health complications and it remains a hotly debated issue among medical professionals. These and other factors are what prompted Martin-Harris to spearhead the conference tradition, and emerge as one of the foremost researchers in the field.
Leader of the Pack
Until recently, there existed no standardized protocol or measures for assessing physiologic swallowing impairment needed to guide targeted interventions. Martin-Harris developed a tool, the Modified Barium Swallowing Impairment Profile (MBSImPÔ), to standardize training of clinicians, the methods and materials used to conduct the exam and interpretation, and the reporting and guided treatment of disorders. The MBSImP was developed and tested during a five-year study funded by the National Institutes of Health on more than 300 dysphagic patients. It was during this process, when she invited an interdisciplinary expert consensus panel to validate of the standards for diagnosis, that she held the first swallowing conference.
Martin-Harris said past conferences included about a dozen faculty presenters, but this time she invited eighty to speak, and challenged them to keep their talks succinct (15-20 minutes), highlighting only the most important findings. Researchers and clinicians were often paired together for the first time to discuss new research, leading to many new collaborations.
This event is a first for the University, taken from seaside to lakeside due to Martin-Harris’ arrival in 2016. She hosted the first conference in Charleston in 2004 when she taught at the Medical University of South Carolina. Martin-Harris is an alumna of Northwestern.
The 2018 Conference Highlights
Martin-Harris said the conference occurs only when there’s big, “ready-for-primetime” news to share in the field. The 2018 gathering, titled “Innovation to Implementation in Dysphagia Practice: It’s All About the Patient,” covered topics that included the latest in brain research and anatomy, and discussions about cutting-edge hand-held or wearable diagnostic technology and devices. The following are some highlights from the information-packed three-day conference.
- Dysphagia can lead to other more serious health consequences, said Debra Suiter, the Director of the Voice and Swallow Clinic and Associate Professor in the Division of Communication Sciences and Disorders at the University of Kentucky.
“If dysphagia goes undetected, malnutrition, dehydration, pneumonia, and even death can occur,” she said during the talk she shared with other presenters titled, “Swallow Screening: Purposefully Different from an Assessment – Sensitivity & Specificity Related to Clinical Yield, Interprofessional Roles, Patient Selection.”
- Alan Silverman, a pediatric psychologist from the Medical College of Wisconsin, discussed the expensive consequences of swallowing disorders that go undiagnosed until critical problems arise.
“When kids have true feeding problems, they tend to stick around and if not treated, they get worse,” he said. “$709m to $3.545b is spent on kids’ hospitalization for eating problems. If you had a good screening tool and you could catch these issues early, we could avoid hospitalization.”
- Diagnosis is likely to become even easier with the help of new technology, said Steve Xu, the Director of the Bio-Integrated Electronics Center at Northwestern. He presented information on new devices, including a soft wearable device that could help clinicians detect aspects of swallowing impairment and provide feedback during swallowing treatment.
“It’s flexible, like a Band-aid, and soft. It adheres to the skin and it’s waterproof and uses Bluetooth technology,” he said. “It has a sensor inside that captures high-frequency vibrations. The sensor can tell the difference between talking, swallowing, and coughing.”
- While technology is rapidly improving, researchers, however, are still working to understand how swallowing works and how best to treat dysphagia. Swallowing is a complex system involving the brain, nervous system, and muscles, said David McFarland, an associate professor at the Université de Montréal’s McGill School of Communication.
“It looks simple but it’s not simple,” he said as he discussed new research about how the body balances breathing and eating or drinking.
- This delicate dance became vividly apparent during the last day’s discussion of BPD, or bronchopulmonary dysplasia, by Pamela Dodrill, a researcher and clinician who works in the Feeding and Swallowing Program at Boston Children’s Hospital. She showed videos of premature babies gasping for air between sips on a bottle. Aaron Hamvas, Chief of Neonatology in the Department of Pediatrics at the Feinberg School of Medicine, discussed BPD, which first grew in notoriety when it claimed the life of President John F. Kennedy’s infant son, Patrick, in 1963.
“This still remains one of the most controversial conditions,” he said, “because we’re not really sure what this is… but we do know it’s a systemic disorder with far-reaching consequences… the sickest infants receive the worst nutrition. Aspiration is also a risk, but it’s not the only bad thing that can happen. There’s apnea as well and that’s not good for these developing brains.”
- Elderly patients can also struggle with dysphagia, especially if they’re coping with Parkinson’s, ALS, or the aftermath of a stroke.
“Stroke is the most common cause of disability after age 65,” said Richard Harvey, Associate Professor of Physical Medicine and Rehabilitation and Physical Therapy and Human Movement Sciences at Northwestern’s Feinberg School of Medicine, who talked about new brain research and presented cases of stroke victims.
- Rosemary Martino, the Canada Research Chair in Swallowing Disorders from the University of Toronto, presented research about stroke victims in Canada.
“Sixty percent of patients with stroke have dysphagia,” she said. “And pneumonia is three times more common for stroke victims with dysphagia than without. This is very important to keep in mind if you’re writing a grant or justifying your research.”
- Psychology also plays a role in treating dysphagia. Several presenters talked about how difficult it is to get some patients to admit swallowing problems.
“Stroke patients are notorious about ‘lying’ about it,” said Gary McCullough, a swallowing and voice expert from Appalachian State University, adding that the primary issue is not really ‘lying’ but lack of awareness. “You can ask them, ‘Do you have trouble swallowing?’ And they’ll say no. Then you ask them, ‘What are you eating?’ and they say, ‘Oh, I’m not eating at all!’”
- Giselle Carnaby, a professor from the University of Central Florida, discussed how head and neck cancer patients sometimes neglect their own treatments. She presented research conducted on 70 patients, which found that 45 percent did not do prescribed swallowing exercises, 27 percent failed to use the prescriptive mouthwashes given by doctors, and 40 percent opted not to do routine maintenance like brushing their teeth.
“We believe fear response led them to avoid all actions,” Carnaby said. “Fear is a modulator, and it blunts cortisone levels so it deregulates the flight/fight behavior and drive patients to avoid certain behaviors. So, keep in mind that your patients may need more support than you think.”
- Swallowing disorders are the most significant functional problem for patients following curative treatments for head and neck cancer, Martin-Harris said. Many patients present with problems during and after their treatment then recover, but many patients are presenting to clinics with swallowing declines that begin well after the conclusion of their treatment. Martin-Harris presented findings from a completed NIH- and VA-supported study on a novel treatment for these patients with chronic swallowing problems that involves resetting the coordination between breathing, swallowing, and airway protection. She is embarking on a new trial next month at the Hines VA Medical Center.
- Attendees at the conference said they found it very informative. Suzanne Friderichs, a clinician from Toronto, said she enjoyed hearing all the latest research.
“It’s been fast-paced and intensive but extremely helpful for me as a clinician,” she said. “I’m here to learn about the current research and how we can apply it to our own practice and I’m going to be doing just that.”
By Cara Lockwood