What data should be collected in ambulatory neurology clinics?

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.

Brian C. Callaghan, MD, MS

Brian C. Callaghan, MD, MS

Dr. Brian Callaghan is an Assistant Professor and health services researcher in the Department of Neurology at the University of Michigan Health System. He is fellowship trained in Neuromuscular Disorders. His research focus is on improving the efficiency of neurologic diagnostic testing. He is specifically interested in neuroimaging for headache, which is one of the most common reasons for a patient to seek medical care. His research has shown that headache neuroimaging is common, costly, increasing over time, and often performed in low risk populations. He has also investigated the appropriateness of diagnostic testing in patients with distal symmetric polyneuropathy. His work has demonstrated a high variation in testing for polyneuropathy with most of the costs driven by MRI and electrodiagnostic studies. He completed a Master’s of Science program in Clinical Research Design and Statistical Analysis at the University of Michigan and a healthcare policy fellowship at the Center for Healthcare Research and Transformation (CHRT). He also serves as a member of the Medical Economics and Management (MEM) and Guideline Development, Dissemination, and Implementation (GDDI) committees of the American Academy of Neurology (AAN).

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