If C. J. Malanga, MD, PhD, had his way, neurologists would be required to – not left with the option of – learning how to use the Internet. As a child neurologist at Harvard's Brigham and Women's Hospital, he said he has seen too many parents of children with multiple disabilities come in with Web-based resources – some of which are good, and some that are fraught with mistakes or outright misinformation.
“To serve our patients' best interests, we must have access to a working knowledge of the Internet,” he said.
In fact, Dr. Malanga and many other neurologists are making good use of a wide range of technology resources to improve patient care – by accessing medical software programs to help make more accurate diagnoses and using video-Internet link-ups to monitor and bring care to patients in rural and hard-to-reach places.
Dr. Malanga first discovered the benefits of the Internet as a child neurology fellow at Massachusetts General Hospital (MGH), trying to determine a differential diagnosis for a case posted on the weekly neuropathology conference. The case involved a 15-year-old boy who was first seen at age 5 with slurred speech and gait instability and who continued to deteriorate over the next 10 years with emerging marked dystonia, dysphagia, tics, and seizures.
CONSULTS ON THE WEB
On their own, Dr. Malanga and fellow trainees came up with a long list of differential diagnoses. But after entering important variables in query form into a Web site, www.simulconsult.com, the search was narrowed considerably to Friedreich ataxia, Hallervorden-Spatz, and Huntington chorea (akinetic-rigid form). Autopsy revealed almost complete striatal atrophy with minimal cortical involvement. The final diagnosis, confirmed by CAG repeat count, was juvenile Huntington disease.
“By choosing from either the presence or absence of specific physical or laboratory findings – which are listed in expandable categories both alphabetically and by system – a differential diagnosis was generated for that patient,” Dr. Malanga said.
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He noted that, among its useful features, the software allows users to change the relative probability of a given diagnosis based on age-of-onset and incidence of the condition in the population. It can profile likely diseases or associated findings for any given finding and provide a breakdown of diagnostic testing by cost.
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SimulConsult contributors submit findings from their own experiences in a peer-reviewed fashion. Material from regular contributors must be approved by the editor responsible for that information, typically the disease editor, and then the coordinating editor before it can be entered into the database.
Michael Segal, MD, PhD, a pediatric neurologist, designed the SimulConsult program because he wanted a better way of arriving at a differential diagnosis than looking up numerous details in textbooks and journals.
“We are trying to run the equivalent of a journal where people contribute a collection of findings in a variety of diseases. The program also helps direct physicians to other items that are useful to check while the patient is still there in order to arrive at the best differential diagnosis.”
In other technology areas, neurologists are using telemedicine – via video cameras and Internet links – to monitor and provide care to patients. Craig Smith, MD, Director of the Multiple Sclerosis (MS) Center at Swedish Medical Center in Seattle, for example, uses a video camera and Internet link to other neurologists to “see” patients who live in remote areas or who have difficulty making in-office visits. They conduct interviews and observe patients performing certain tasks, such as taking a walk test and performing a nine-hole peg test.
The neurologists use the information to make judgments about the efficacy of treatments and to assist in helping outreach clinics' staff make decisions about patient care, Dr. Smith said. The Seattle MS Center is proposing a shared database structure that will use the Internet to connect major MS Centers across the nation, contributing to a growing repository of information regarding treatment of multiple sclerosis.
Benjamin Rix Brooks, MD, Director of the MDA/ALS Clinical Research Center at the University of Wisconsin Hospital and Clinics, has used telemedicine for 10 years. He finds it particularly helpful for his patients, many of whom are on ventilators and find traveling quite difficult.
“Studies suggest that there is a large uncovered population of amyotrophic lateral sclerosis (ALS) patients. After their initial evaluation at the center, only about 30 percent return for neurological follow-ups after one year – mostly because they are physically unable to return.
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“Since 1996, when the ALS CARE Program registry – a national database of clinical data on ALS patients – was started, approximately 4,500 patients have been entered – whereas the estimated prevalence of ALS nationally is actually as high as 15,000–30,000.”
Dr. Brooks explained that the program has been field-testing entry of clinical data from the registry – through self-reports by patients and functional clinical measurements via telephone, video, and Web-based encounters. “We have validated that measures obtained via telemedicine are highly correlated with the same measures obtained at the on-site ALS clinic face-to-face encounters performed one to two days after the telemedicine encounter.
Via telemedicine links, Dr. Brooks can also consult about care decisions with the patients' local physicians. He looks forward to the time when that technology can be expanded to patients in their homes.
The timely delivery of stroke care is a practical concern in many remote areas. Lee Schwamm, MD, Assistant Professor of Neurology at Harvard Medical School and Associate Director of the Acute Stroke Service at the MGH, developed the TeleStroke system to address an increasing demand from outlying hospital emergency room physicians in places like Martha's Vineyard, an island accessible only by ferry boat or plane. Emergency room physicians would frequently call to ask if they should initiate tissue plasminogen activator (tPA) therapy in their patients.
Given the strict time demands of a zero- to three-hour window for tPA efficacy, quick responses were required. In that time, Dr. Schwamm and his colleagues had to see and perform structured interviews and detailed neurological examinations of these patients, review their Computed Tomography (CT) scan and laboratory results, and apply the NIH Stroke Scale. Dr. Schwamm launched a project at Martha's Vineyard Hospital (MVH) – applying commercially available, relatively inexpensive technology – to provide these services in the most timely way.
A server connected to a CT scanner sends compressed images across the Internet in a secure manner to any computer with Web access and real-time video conferencing. This facilitates a live interactive teleconsult between the emergency room physicians and the neurologists at MGH. Based on these results, Dr. Schwamm and his colleagues can decide if the patient should be treated and heliported out, or if treatment is not appropriate (thus saving thousands of dollars in unnecessary helicopter evacuation).
Only one patient had received tPA – available since 1996 – in the years prior to the TeleStroke program; in the past 18 months alone, five or six patients have received tPA there. In addition, the teleconsults have helped diagnose encephalitis, acute hypoglycemia, and a subdural hematoma (missed due to the absence of a radiologist on the island).
Dr. Schwamm noted that stroke expertise is unequally distributed in the US – concentrated mainly at tertiary care centers and advanced community hospitals. “We know that only three to seven percent of stroke patients are getting tPA and this is far less than what it should be. We must overcome the therapeutic nihilism that exists regarding the treatment of stroke. We need to bring this expertise into the community.” Telemedicine, he said, is one way to do that.
P. David Charles, MD, Director of the Movement Disorders Clinic at Vanderbilt University Medical Center and Chairman of the National Alliance of Medical Researchers and Teaching Physicians does patient research in the use of Deep Brain Stimulation (DBS), and he too would like to see treatment in his subspecialty made available to more patients.
He believes the next generation of DBS devices – which will be comprised of a single pacemaker-like device inserted under the chest wall with a wire going to each side of the brain – can be easily adapted to relay information over the Internet. Currently, DBS devices gather information about patients and store it until the next doctor visit. Only a few centers, such as Vanderbilt, have physicians trained to adjust the devices. But as cardiac pacemakers with home monitoring capabilities are proving their value, telemedicine-using DBS may be next.
IDEAL WAY TO TRANSMIT DATA
Ronald G. Emerson, MD, a clinical neurophysiologist at Columbia-Presbyterian Medical Center in New York City, is already using the Internet for remote transmission of data from electroencephalography, for example – both stored and live – to oversee monitoring of the intensive care unit and care of his epilepsy patients. He has a technician in the operating room and views remote displays in his office and at the lab.
“Remote access via telemedicine to operating room monitoring is essential to my work,” Dr. Emerson said. “It allows me to provide much better supervision of technicians, residents, and fellows. There's a world of difference between listening to a tech's or resident's description of an EP in the operating room and being able to look at it myself.”
Dr. Emerson said the hospital is upgrading the server to permit video and audio, along with electroencephalogram, to observe patients directly. This will enhance management of the epilepsy monitoring unit, he added.
HURDLES TO CARE
Despite the promise of new technologies, there are hurdles to making them more widespread. Dr. Charles said the major barrier to high-quality telemedicine is the lack of payer acceptance. “Medicare adoption of medical technology has been very slow,” he said, “and outdated government regulations deny patients access to new tools that can have a profound impact on the quality of their lives.”
The National Alliance of Medical Researchers and Teaching Physicians focuses on educating physicians about the importance of health care policy and how it affects patient access to medical technology. The organization supports the passage of the Medicare Remote Monitoring Services Coverage Act (S 1607, HR 3572), a bill now pending in Congress, that would provide the same Medicare coverage and level of reimbursement for electronically-based remote patient care as it would for in-person services. When this hurdle is crossed, Dr. Charles said, it could allow neurological patients to receive state-of the-art care, regardless of geography.