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What data should be collected in ambulatory neurology clinics?

Brian C. Callaghan, MD, MS, University of Michigan Health System

In Feasibility of the Collection of Patient-Reported Outcomes in an Ambulatory Neurology Clinic, Moura et al describe the collection of patient reported outcome measures (PROMS) including the modified Rankin Scale (mRS), quality of life in epilepsy (QOLIE), and the PROMIS-10 physical and mental health scores. PROMIS is an NIH-sponsored initiative to promote the use of methods and measures for collecting outcomes. Moura et al collected the information directly from patients using iPads in the waiting room of a large, academic neurology clinic, and almost half of the more than 6000 patients participated. The authors take the ‘glass-half-full’ interpretation that the 49% participation rate indicates that data collection is feasible. However, the ‘glass-half-empty’ interpretation should also be considered because 51% of the subjects either declined or could not participate. The study also demonstrates that patients with English as their preferred language, who were married, privately insured, and attended general neurology clinic were more likely to participate. The authors correctly point out the potential for vulnerable populations to be left out if measures to increase their participation are not used. However, the biggest question remains: what data should be collected in ambulatory neurology clinics? Just because we can collect this data does not mean that we should. The resources needed to start collecting this type of data and the effort from physicians to review and interpret them is not trivial. Small and single neurology practices will find this effort even more daunting. Prior to engaging in efforts to collect large amounts of data from our neurology patients, we must have confidence that the information will not lead us astray and that there is utility of this information. Are we collecting this data for clinical or research reasons? Does the data positively impact patient care? Unfortunately, there is much to learn, but Moura et al have provided an essential first step.

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Stand up for Rituximab 

Annette M. Langer-Gould, MD, PhD, Kaiser Permanente Southern California

In the article, Reducing costs while enhancing quality of care in MS, Kister and Corboy urge neurologists to do their part to improve the affordability of MS medications. The unaffordability of MS medications is driven by the outrageous prices that are in no way tied to the benefits these medications provide. The experiences they share include a few simple strategies to lower costs without diminishing quality of care. The one with the most impact is the use of rituximab- the forerunner to ocrelizumab that will likely be FDA approved and available for a ridiculously high price in 2017. The biggest barriers to implementing rituximab use are: 1) most insurance carriers deny coverage because it is not FDA approved for MS; 2) neurologists are afraid of legal action if they prescribe a non-FDA approved product and 3) the drug companies are incredibly good at marketing their products with glossy ads to promote brand bonding, enticing many prominent neurologists with speaker fees, dinners, first-authorship on New England Journal articles for studies they didn’t design, conduct, analyze and so on. Biogen and Roche are already busy creating false distinctions between ocrelizumab and rituximab as they did for Lucentis and Avastin and frightening neurologists into believing they would be harming their patients or at risk of litigation if they use rituximab. Off-label prescribing is what neurologists do all the time, the only legal risk is if ocrelizumab had been proven to be superior or safer than rituximab, data that do not exist and a study Roche and Biogen would be afraid to conduct. The Swedish and Kaiser Permanente neurologists negotiated with their medical centers to allow the use of rituximab in their highly active patients when natalizumab was not an option. Use of rituximab has increased dramatically in Sweden and Kaiser Permanente as the highly favorable efficacy/safety profile and high patient satisfaction becomes clearer. Pharma tried to pressure the Swedish government to halt this use of rituximab, which was met by outrage from their neurologists. Swedish health care authorities reviewed the extensive use of rituximab in MS and deemed it scientifically sound and legal. I urge all neurologists to stand up for their patients as the Swedish neurologists have done and help your patients get access to rituximab.

Editor's Note: For additional information, see the recent article
Rituximab in multiple sclerosis - A retrospective observational study on safety and efficacy
by Salzer J, Svenningsson R, Alping P, et al

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