Patient-Founded Fund Helps Medical Student Showcase Research on Mental Health Burden in ALS

Virginia Commonwealth University fourth-year medical student Ally Tegner presented research at the American Academy of Neurology's (AAN) annual conference in Chicago demonstrating that patients living with amyotrophic lateral sclerosis (搜索)搜索该疾病 (ALS) arrive at their first clinic visit with significant unmet mental health needs. Her poster, titled "The Relationship Between Diagnostic Delay and Rates of Anxiety and Depression in Patients Living with Amyotrophic Lateral Sclerosis (plwALS)," was one of about 200 selected for presentation and one of only six featured on a poster tour for attendees.

Tegner's participation was made possible through support from the Harper's Hope Fund (搜索)搜索该词条 and VCU Health (搜索)搜索该词条's Department of Neurology leadership. The Harper's Hope Fund was founded in 2014 by Vic Harper, a patient in VCU Health's ALS Clinic, and his family. Harper recognized the high costs of supportive equipment for patients with the disease as well as the need for more research into ALS and greater public awareness. The fund accepts donations and is used to assist ALS research, education and outreach, and support for patients and families.

The Mental Health Burden of ALS

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, eventually impacting a person's ability to speak, swallow, and even breathe. There is currently no cure. Tegner, who was introduced to the VCU Health (搜索)搜索该词条 ALS Clinic in her second year of medical school, was drawn to the clinic's focus on multidisciplinary care, where a patient sees multiple clinicians on their care team in the same visit due to the difficulty ALS patients face in traveling.

Tegner is especially interested in the mental health aspects of treating patients with chronic progressive diseases such as ALS, which can be challenging to diagnose. On average, people with symptoms can wait 10-16 months before receiving a diagnosis, a delay that adds to their stress and impacts their mental health. "It's a very mentally burdening disease to experience or have a loved one diagnosed with," Tegner said.

Noting that there is no formal method for assessing patients' mental health during their initial clinic visit, Tegner set out to study how an ALS diagnosis relates to depression. "Is there somewhere early on in the initial visit that we could intervene in the mental health aspect that's missing right now?" she said.

Study Findings and Early Intervention

Her research involved giving patients two depression diagnostic surveys at their initial clinic visit. For her AAN poster, she analyzed initial data from a small sample size of 24 patients and found that ALS patients arrive at their first visit in need of more mental health support.

"We saw that both with anxiety and depression, patients do have significant ratings with the surveys," Tegner said. "There is a need to intervene earlier with counseling or pharmacological interventions."

Expanding the Multidisciplinary Care Team

Tegner is working to grow her research to 100 patients and continue collecting data, with plans to write a journal article. She hopes her research will lead to psychiatrists and other mental health professionals becoming part of the multidisciplinary care teams that treat ALS patients, and that clinicians will give greater attention to the mental health impacts of being diagnosed with an incurable, progressive disease.

"There's significant anxiety and depression in getting diagnosed with this disease and having uncertainty for so long," she said. "Overall, I'm hoping to be able to recognize this and intervene earlier, even in that initial visit … be able to get these patients counseling and start therapies if necessary to help with their mental health burden — to do anything we can to really help patients with this progressive disease."