Battling ALS with Centralized Care
Evidence shows that quality of life and survival improve when ALS patients can access a ‘one-stop shop’ of care.Jorge Almodovar-Suarez, MD
Prior to August of 2014, you had probably heard of Lou Gehrig’s disease, but didn’t know much about it. Thanks to the Ice Bucket Challenge going viral on social media that year—and raising $115 million for research in the process—the disease also known as ALS (Amyotrophic Lateral Sclerosis) has become somewhat of a household name.
This fatal disease attacks the nervous system, causing paralysis that affects a patient’s ability to move, breathe, speak and eat. As a result, patients need treatment from a variety of health-care providers. While Dartmouth-Hitchcock (D-H) has an ALS Center in Lebanon and research labs at the Geisel School of Medicine at Dartmouth, it also now offers an ALS Multidisciplinary Clinic in Manchester. Dartmouth-Hitchcock Manchester in Manchester, NH offers a monthly ALS Multidisciplinary Clinic that works in tandem with the ALS Center at DHMC to provide support in the southern region.
A community partnership
The clinic delivers the convenience of complete care without requiring travel to Lebanon or Boston. Patients visit their neurology, pulmonary, palliative care, nutrition and/or rehabilitation providers, depending on their current needs.
“Evidence shows that quality of life and survival improve when ALS patients can access a ‘one-stop shop’ of care,” explains Jorge Almodovar-Suarez, MD, director of the ALS Multidisciplinary Clinic, staff neurologist and assistant professor of Neurology at Geisel.
A total of 30 to 35 ALS patients are treated by D-H in Manchester.
The clinic opened in September of 2016 through what Almodovar-Suarez describes as a “three-way strategy of community partnering” between D-H, Catholic Medical Center (providing patient rehabilitation services) and the ALS Association Northern New England Chapter, which awarded D-H a $25,000 grant over two years.
The grant is paying for one-third of clinic patient services that are unbillable to insurance. Once the clinic has been operational a full year, Almodovar-Suarez plans to apply for more permanent funding to further alleviate costs.
“The clinic has been a very successful organizational model because of the support of leadership since Day One,” Almodovar-Suarez says. “Mauret Brinser, executive director of the ALS Association Northern New England Chapter, has been essential to making the clinic happen, along with Jeff Cohen, MD, D-H chairman of Neurology, and Keith McAvoy, MD, Neurology section chief in Manchester.”
A unique aspect of the clinic is the nurse coordinator. Jennifer Roy, RN, is a clinical nurse for the D-H Neurology department, who dually serves as ALS nurse navigator for the Manchester clinic. She works with patients and their families throughout the entire clinic experience, beginning with a screening phone call that help identify the providers the patient requires and triage resources more efficiently. For those who cannot verbally communicate, she corresponds with through the myD-H portal (www.mydh.org), a function of our electronic medical record system, which facilitates direct electronic access to health care documentation and secure direct email access to health care teams across the system.
Roy coordinates the referrals and services necessary post-clinic, including physical, occupational and speech therapy, as well as nursing and hospice care with home health agencies.
“I enjoy getting to know the ALS patients, their families and that whole dynamic,” she shares. “I learn about their kids in college or their sister moving closer to help out, and it helps us determine additional support services we can get for them—like homemaker assistance or Meals on Wheels.”
The ALS community is celebrating the availability of Edaravone, a new medication that slows the disease’s progression. However, Almodovar-Suarez stresses that medication alone is not adequate, and the multidisciplinary clinic approach of care is crucial.
The clinic has the ability to diagnose ALS and refer patients for research. For more information, contact D-H Neurology at 603-695-2940. To support ALS research, participate in the annual August Ice Bucket Challenge, or join the D-H team in “The Walk to Defeat ALS.” To learn more about D-H’s work, listen to a recent radio interview with Dr. Almodovar-Suarez.