Multiple sclerosis (MS) clinicians face continued challenges in optimizing neurological care, especially for people with advanced MS living in medically underserved communities. Because of insurmountable geographical and physical challenges, patients cannot always travel to neurology office appointments.
Could telemedicine -- the use of telecommunication and information technology to provide clinical health care from a distance -- be effectively used to address this problem? A researcher in the School of Medicine at the University of California, Riverside is set to find out.
Elizabeth Morrison-Banks, M.D., a health sciences clinical professor who studies MS, including the mistreatment of people with advanced MS, has received a $100,000 grant from Genentech, a biotechnology company, to develop and pilot-test a new home-based telemedicine program geared toward treating MS patients.
The one-year project is titled "Clinicians' Online Neurology Network Empowering Communities through Telemedicine - Multiple Sclerosis (CONNECT-MS)."
MS is an autoimmune disease of the brain and spinal cord, impacting about 2.3 million people worldwide (400,000 in the United States). Affecting more women than men, it can be seen at any age, although it is most commonly diagnosed between the ages of 15 and 50. Early disease-modifying therapy has been found to slow the progression of this unpredictable disease and lessen long-term disability.
"In 2015-2016, in collaboration with the Landon Pediatric Foundation, our research group developed a pilot telemedicine program for MS care funded by a Genentech research grant," Morrison-Banks said. "While our preliminary data suggested that telemedicine is effective for and acceptable to patients with MS, outreach was limited by the complexity of scheduling visits to the general neurologists' offices in coordination with simultaneous telemedicine consultations. We are therefore proposing a new home-based telemedicine program."
Morrison-Banks said her research group will randomly assign participating adults with MS to an intervention group that will receive telemedicine intervention versus a control group that will be offered the usual care. For the intervention group, a nurse practitioner will visit patients in their homes, review the history and perform a neurological examination in collaboration with a neuro-immunologist at UC Riverside who will participate through a telemedicine connection.
The CONNECT-MS project's nurse practitioner will visit each patient at home within three to four weeks after study enrollment to coordinate a HIPAA-protected telemedicine visit with Morrison-Banks. Together, the nurse practitioner and neuro-immunologist will conduct an intake visit, reviewing the patient's history, performing a neurological examination and going over laboratory results and neuro-imaging before discussing decisions about work-up and management with the patient and family.
The research group will compare the intervention versus control groups for a number of variables, including quality of life, pain levels, fatigue, sexual satisfaction, bladder control, bowel control, visual impairment, and mental health.
"The goal is to determine whether the home telemedicine approach works as well as usual care -- that is, office visits with the neuro-immunologist," Morrison-Banks said. "This is a pilot study and it may not be able to show whether MS telemedicine in patients' homes is better than usual care, but if it appears to be equivalent - and if patients and families like it better because of its convenience and comfort -- then the pilot study will provide useful preliminary data to guide larger research studies in the future."
"Tele-neurology" is now a popular approach for stroke care because it allows rural communities rapid access to a qualified neurologist in those crucial first minutes of an acute stroke, when decisions need to be made about whether to initiate interventions that can sometimes be lifesaving.
Morrison-Banks said that telemedicine is newer in MS care and the focus is different from acute stroke care. People living with MS in rural areas can access a fellowship-trained MS specialist through telemedicine in a way that may never be possible for them if they had to travel long distances to get to the neuro-immunologist's office.
"People with advanced MS face additional barriers to traveling to an MS center, even if it is located nearby, because if they have a lot of disability, over time it tends to become increasingly difficult for them to leave their homes," she said. "So if we can bring the 'medical home' into people's actual homes, we can meet multiple needs at the same time while allowing a safe and comfortable environment for the medical visit."
She noted that caveats include the challenges of implementing any new technological solution.
"Some people may miss the face-to-face experience with the MS specialist," she said. "In our current telemedicine clinic for teens with MS, as one might expect, the teens adapt to the technology without missing a beat. I think these young people are going to lead the way for the rest of us in blending technological solutions into our everyday lives."
Morrison-Banks will be joined in the research by Kristyn Pellecchia, a clinical assistant professor in the School of Medicine and a nurse practitioner who will visit patients' homes to conduct the telemedicine visits and collect clinical research data. She will also participate as a co-investigator in the research study.
MS is the leading cause of non-traumatic disability among young adults in the United States. A disease that disrupts the flow of information within the brain and between the brain and the body, MS is triggered when the immune system attacks the myelin sheath, the protective covering around the axons of nerve fibers. The "demyelination" that follows causes a disruption of nerve impulses. As the protective sheath - best imagined as the insulating material around an electrical wire -- wears off, the nerve signals slow down or stop, and the patient's vision, sensation and use of limbs get impaired. Permanent paralysis can result when the nerve fibers are completely damaged by the disease.
Source: University of California - Riverside