Mark G. Goetting, MD, Medical Director of the Sleep Disorders Center at St. Mary's Health System in Evansville, IN, became the fourth neurologist in a two-year period to evaluate a 22-year-old woman who came in with a progressive gaze paresis, ataxia, cognitive decline, and cataplexy.
She was uninsured, and her parents, who had already paid more than $6,000 out-of-pocket, had yet to receive an answer to their daughter's deteriorating condition. Striving to make the singular best choice of tests, Dr. Goetting posted a query on the listserv, Child-Neuro List. When the majority of participants responded in favor of the diagnosis of Niemann-Pick type C, he ordered the studies and confirmed their suspicion.
Although a sleep specialist who manages narcolepsy with cataplexy on a routine basis, he was uncertain about the best course of treatment for this challenging patient. When he then asked the group for advice about treating her dramatic cataplexy, a leading expert on the disease suggested protriptyline, an old treatment that has become second-line. Office samples eliminated the cataplexy and greatly improved the quality of life for the entire family. She has remained in remission for the past four months.
HELP FOR COMPLEX CASES
More and more neurologists are turning to listservs – electronic mailing list services – to assist with complex clinical cases. These forums allow participants to correspond quickly and efficiently using e-mail, Web browsers, and newsreaders. They create online medical communities that facilitate communication with colleagues and solicitation of opinions from subspecialists and experts in areas that extend beyond our customary reach.
The swift feedback and potential for dynamic discussion can, at times, simulate a virtual Grand Rounds. Dr. Goetting, who subscribes to Child-Neuro, as well as Peds Sleep List, Sleep List, and Neurolist, said: “I appreciate the rapid access to a large audience of peers; the efficiency allows for true dialogue. Facts and opinions shared in this manner can directly improve patient care.”
Roy D. Elterman, MD, a pediatric neurologist who has been in group practice in Dallas, TX, for 23 years, and a member of Child-Neuro for five years, added: “The listserv provides incredible access to cogent thought. Parents are comforted if I tell them that I may not be certain of the best course of action, but I have immediate access to 1,200 child neurologists to whom I may post a query regarding their child. It is an efficient way to get information, especially regarding clinical scenarios that are not easily captured by literature searches,” he said.
TARGETING A LARGE AUDIENCE
Many participants noted that there is perhaps no better way for neurologists to ensure wide, targeted distributions when seeking referrals to specialists or peers in other geographic locations or posting notices of meetings, grant availability, or clinical trial opportunities.
Steven Leber, MD, PhD, Coordinator of the Child-Neuro Listserv for the past 10 years, said: “When there have been drug shortages over the years, the listserv has been instrumental in coordinating nationwide campaigns to manufacturers.”
For example, he said, “when ACTH [adrenocorticotropic hormone] became abruptly unavailable in 1996, many neurologists from the listserv contacted the FDA Commissioner explaining that infants were being placed at jeopardy and urging his immediate intervention.” The group engaged in lengthy discussions about alternative treatments, and members who practiced in countries in which ACTH was not available offered their experiences. The Epilepsy Foundation was staggered by the rapidity and volume of physician pleas, and within a month, Rohne-Poulenc-Roher, who had discontinued manufacturing ACTHAR gel, announced that they would resume production. Furthermore, the company arranged for free medication to be distributed through a system established by the National Organization for Rare Disorders.
Because many listservs include international participants, similar queries about medical conditions less common in the US or medications that are not FDA-approved may yield feedback more quickly than from any other venue.
“The international nature of the list is especially helpful,” said Robert S. Rust, MD, Thomas E. Worrell Jr. Professor of Epileptology and Neurology at the University of Virginia in Charlottesville, who has been a subscriber to Child-Neuro since it began.
“One of my earliest posts concerned a case of spinal gnathostomiasis we encountered at Wisconsin. A participant in Thailand responded almost immediately… a decade or so prior to Moore's recent fine review of that ‘emerging disease’ subject. Exceedingly valuable contributions are made on many other kinds of conditions by our remarkably able colleagues in Turkey, Israel, Britain, Ireland, Australia, Germany, and other countries.” Dr. Rust continued, “In addition, we are sometimes treated to hot-off-the-press breaking news, such as that concerning metabolic basis of pantothenate kinase deficiency.”
Damon Fellman, MD, trained both in adult and child neurology and currently a member of a six-person neurology practice in Hackensack, NJ, has participated in both listservs for over five years. He, too, benefited from having access to an international community of neurologists. “When I was planning to visit my daughter on college exchange in Sweden, I posted a query on Child-Neuro for information about patient care in Sweden. Eventually the discussion led to an invitation to visit the Karolinska Institute, where I sat for several hours discussing practice issues with Swedish neurologists.”
ENSURING QUALITY CONTROL
Listservs have had to develop their own unique quality-control systems. Although there is no formal oversight over quality of content or accuracy of posts, clinical statements that are inaccurate, reflective of minority opinion, or otherwise biased frequently encounter a swift demand for evidence-based authentication or even rebuttal with postings of PubMed literature searches and links to medical and scientific studies. “Sometimes misconceptions that perhaps many of us share are corrected on the list, to the benefit of all,” said Dr. Rust.
But, Dr. Goetting cautioned, “one of the limitations of listservs is that clinicians may misinterpret a cluster of congruent postings as a professional consensus, even a standard of care. Internet lists are simply informal discussions, and the majority of subscribers are mute – so-called ‘lurkers.’ Thus the opinions expressed do not necessarily represent the usual practice, state-of-the-art thinking, or defensible care. The reader must consider the source.”
Jorge A. Romero, MD, a Houston neurologist and subscriber of Neurolist for six years added: “The limitations are self-evident: some discussions never really come to a conclusion and we do not get the ‘final answer.’ Nevertheless, the discussions about thunderclap headaches, asymptomatic aneurysms, secondary prevention of stroke, thrombolytic agents, neuromuscular diseases, among others, have all had an indirect effect on my approach to patients. Sometimes, I have learned from the stimulus to participate and review the literature; other times, pearls of wisdom have come directly from participants. More often, I have found reassurance that some of my own doubts about a case are also shared by my esteemed colleagues, giving me a sense of ‘shared ignorance’ in the profession: that the state of the art is very fuzzy.”
WHAT IS INAPPROPRIATE?
There is much discussion about what constitutes inappropriate material on a listserv. Listserv coordinators spend many volunteer hours per week maintaining these sites, but tend to limit their interventions to reminders about pre-established rules. Dr. Leber pointed out that ''the system works through self-censorship – members intervene when postings deviate from agreed-upon terms.
“There is no pre-screening, but, on extremely rare occasion, we have had to expel or block postings from a member who has blatantly ignored the rules or, for example, tried to sell a product,” Dr. Leber said.
Michael H. Rivner, MD, moderator of the adult neurology listserv, Neurolist, is also reluctant to censor postings. He does, however, intervene privately offline if a member posts statements that are blatantly inappropriate.
Perhaps one of the more controversial aspects of an open international and diverse congregation is the issue of political posts. Freedom of speech must be weighed against the potential for fracturing the community and alienating members by exposure to religious, moral, ethical, or political viewpoints that some readers may find offensive. “Occasional brief epochs of irritation arise when inappropriate subjects are broached or comments are made, but the good sense of the participants and the excellent and intelligent stewardship of Drs. Leber and Mack restore composure very quickly,” Dr. Rust explained.
CONCERNS ABOUT PRIVACY
Privacy issues are a continuing concern. Although patient names are withheld, there exists a potential for privacy violations, including situations in which one neurologist may recognize another's patient, consultant, or referring physician. Similarly, there have been incidents of inadvertent publication of list posts on the Internet. And, although coordinators control subscription and log-on requires the issuance of passwords, the system is nevertheless susceptible to infiltration by non-practitioners or persons who should otherwise not have access.
Dr. Goetting addressed this concern in a recent post. “It does make me cringe to learn that some parents monitor this list, only because they are usually silent lurkers and not participants, giving a false sense of their absence and thus privacy,” he said. “We do deserve and need privacy. It is imperative to professionalism and is universal. Nevertheless, I admit that Internet lists are not the place to fully ‘let one's hair down.’”
Legal experts point out that postings are, in theory, discoverable, and that although such case law is in its infancy, there exists a potential liability for posters, as well as participants who have become de facto consultants on a case that ends up in court. Furthermore, communication failures and misunderstandings occur with greater frequency in written as opposed to face-to-face or telephonic exchanges, due to the inability to adequately relay tone in this one-dimensional medium. As with all e-mails, it is advisable to avoid anger, sarcasm, harsh criticism, and libelous references to third parties in messages. But such infractions are rare. Dr. Rust said: “Among the reasons that the list has thrived is the good-nature and good-will of child neurologists – those virtues and the availability of the delete button.”
- Child-Neuro listserv, established in 1993, currently has approximately 1,250 members from 60 countries. In 2003, there were 1,500 postings and an average of four posts per day. For more information, visit www.personal.umich.edu/∼leber/c-n/e-mail.html or contact the listserv coordinators – Steven Leber, MD, PhD, at firstname.lastname@example.org and Kenneth J. Mack, MD, PhD, at Mack.email@example.com.
- Neurolist, established in 1994, currently has approximately 1,100 subscribed members as well as additional members who log on through MedLink, a Web-based clinical information service. Its members come from at least 30 countries. It averages 12 posts per day or 4,000 postings per year. For more information, visit http://neurolist.com/index.html or contact the listerv coordinator, Michael H. Rivner, MD, at MRivner@neuro.mcg.edu.
ARTICLE IN BRIEF
✓ Increasingly, listservs have become an effective option for neurologists seeking opinions and perspectives on neurology care and treatment from a diverse and international panel of experts.
✓ Listserv moderators caution, however, that posters should not interpret congruent postings as measures of professional consensus or a standard of care.