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Hawkins and Berman provide an excellent summary of the pharmacology of the
novel anti-psychotic pimavanserin

Roger L. Albin, MD, University of Michigan

Psychosis is a common problem in advancing Parkinson disease (PD). There are significant limitations of standard approaches of adjusting dopamine replacement therapies and using unconventional anti-psychotic agents such as clozapine and quetiapine. Pimavanserin is a promising addition to our therapeutic arsenal. Hawkins and Berman thoughtfully emphasize our relatively limited knowledge of pimavanserin clinical pharmacology. It was approved on the basis on 1 trial in a selected group of PD participants. Additional trials, particularly in PD dementia and Lewy body dementia subjects, and good post-marketing surveillance are needed to fully understand the utility of this agent.

How should clinicians use this agent now? Psychotic symptoms, usually visual hallucinations and illusions, are common in PD but frequently don’t require treatment. Like other PD features, psychotic symptoms should be treated when they cause disability. Many PD patients experience infrequent, non-threatening hallucinations. Some patients have preserved insight into the unreality of their hallucinations, mitigating the need for treatment. In some demented patients, even frequent hallucinations do not cause significant disability. Pimavanserin, like other new agents directed at niche markets, is expensive. As Hawkins and Berman point out, costs to patients will vary considerably. Regardless of costs to patients, the social cost remains relatively high. After some discussion, our Movement Disorders group decided to treat pimavanserin as a second line agent. We elected to initially trial low dose quetiapine in PD patients with troublesome psychotic symptoms. If unsuccessful, we try pimavanserin. Our approach may change as experience with pimavanserin accumulates.

Practicing clinicians, especially Movement Disorders specialists, can play an important role in expanding our knowledge of pimavanserin effects. The discovery of dopamine agonist related impulse control disorders, for example, began with a small case series reported by Mark Stacey. Dr. Stacey’s example is a good model for clinicians using new agents.

For more information access the full article, Pimavanserin: A novel therapeutic option for Parkinson disease psychosis.

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Dr. Lyell K. Jones Answers Our Questions on the Axon Registry

Kevin A. Kerber, MD, MS, Ann Arbor MI

In Introducing the Axon Registry, Sigsbee et al outline the rationale, structure, function, and challenges related to the AAN's development of its own clinical quality data registry: the Axon Registry. Dr. Lyell K. Jones, co-author, answers some questions we had after reading the report.

Q1) The article mentions that registries guide improvements at the population level. What are the best examples of quality metric registries leading to meaningful improvements?

While we have a great deal of experience with registries in medicine, clinical quality data registries are relatively new. Several other specialty societies have led the way in the developing registries similar to the Axon Registry, and have learned a great deal about the quality of care delivered to their respective patients. One example is the American College of Cardiology’s PINNACLE registry, which has yielded numerous insights into measure performance, clinical outcomes, and disparities in cardiovascular care. Many readers of Neurology may be familiar with the American Heart Association’s Get With the Guidelines registry, which has provided cerebrovascular neurologists with extremely valuable data regarding stroke outcomes and real-world effectiveness of cerebrovascular interventions. Below the system and population level, individual practices that participate in registries like Axon have an unprecedented window in their processes and outcomes of care, and can use their own data to improve quality of care.

Q2) Is it a problem that the entities creating the quality registries are also the ones the most vested in demonstrating value?

The foremost goal of the Axon Registry is to provide a tool for neurologists to examine and then improve the quality of care they provide to patients with neurologic disease. A prerequisite for this goal is that the data housed in the registry are accurate and valid. The AAN has a robust data governance policy that safeguards the integrity of the data and ensures that access to the data for analysis is done responsibly, with full disclosure of potential conflicts. There certainly will be opportunities at the system and database level for independent health services researchers to use Axon data to examine elements of the value equation, and we encourage them to do so.

Q3) The article mentions that validation steps are performed to assure the accuracy of data capture. Can you share with us the reliability thresholds for concluding measure performance as accurate?

The Axon Registry validation strategy includes practice level validation, systematic reviews of measure logic, and validation at the database level. One of the primary 2017 goals for the Axon Registry will be completing our database level validation. Given the scope and complexity of that work, our plan is to work with an external vendor to complete the validation process. Many specific details such as reliability thresholds either haven’t been determined or are too preliminary to share broadly.

For more information, see Introducing the Axon Registry: An opportunity to improve quality of neurologic care,


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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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Interview with an Author


Dr. Kevin Kerber interviews Dr. S. Claiborne Johnston:  

Dr. Johnston talks about his leadership role in promoting and facilitating change in care delivery, specifically regarding value based models for reimbursement, investing in structures that support this, and redesigning care to fit the model.

In October of 2016, Dr. Kevin Kerber, MD had the opportunity to interview Dr. S. Claiborne Johnston, MD, PhD, University of Texas at Austin, Dell Medical School where Dr. Johnston is the Dean, Vice President for Medical Affairs, Frank and Charmaine Denius Distinguished Dean’s Chair in Medical Leadership. Dr. Johnston has served as the inaugural Dean of the Dell Medical School since March of 2014. He is also a neurologist specializing in stroke care and research and holds a PhD in epidemiology. Prior to his position in Austin, he was associate vice chancellor for research at the University of California, San Francisco where he directed the Clinical and Translational Science Institute. While there, he founded the UCSF Center for Healthcare Value working to improve care quality while decreasing costs. Dr. Johnston has published over 300 scientific works and has won several national awards for his research and teaching.

Download Interview                                                             Read Full Transcript             

Johnston  N A M E : S. Claiborne Johnston, MD, MS 
  T I T L E
: Vice President for Medical Affairs and Dean of the Dell Medical School, Professor (Medical), University of Texas at Austin
  E D U C A T I O N: He earned a B.A. in physics at Amherst College and medical degree at Harvard Medical School. He has a PhD in epidemiology from the University of California, Berkeley and completed his residency in Neurology at the University of  California, San Francisco, where he later trained in Vascular Neurology
  H O B B I E S: He is the executive vice editor of Annals of Neurology. He’s also a skier and a runner



Listen to previous interviews!

Dr. Ray Dorsey interviews Dr. Benzi Kluger - Parkinson Disease: Perspectives on Palliative Care Needs: What are they telling us?

Dr. Robert Gross, Editor-in-Chief, interviews Ray Dorsey, Editor of Innovations in Care Delivery 

About the Editors

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Editor, Innovations in Care Delivery
Brian C. Callaghan, MD, MS, Ann Arbor, MI


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Editor, Innovations in Care Delivery
Kevin A. Kerber, MD, MS, Ann Arbor MI


We welcome your feedback and suggestions! kpieper@neurology.org

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