Did you know that anxiety and depression are common in Parkinson’s disease (PD)? Both of these fall under the umbrella of mood disorders. But despite being common in PD, they often go undiagnosed (or incorrectly diagnosed) and under-treated.
By combining forces, a scientist-patient advocate team involving Alit Stark-Inbar, Ph.D., at UC Berkeley and Ronnie Wanetick, a PDF Research Advocate, is finding solutions.
The two received a PDF PAIR Leadership Award to study EMOTE, an iPad app that can help to monitor depression and anxiety throughout the day, and even offers games to help ease symptoms. While the app is still being tested (it’s not yet available to the public) the initial results are promising. We sat down with Dr. Stark-Inbar to hear about the research, and how the insights of people with PD helped to make it happen.
Q. You are studying mood disorders in PD with the Ecological MOod TrackEr (EMOTE) app. Can you tell us more about it?
A. We created an iPad app called EMOTE (Ecological MOod TrackEr) that provides a video game-like environment that helps people with PD and continuously monitors their mood status. The app captures changes in a person’s mood (symptoms of anxiety and depression) by asking them to complete questionnaires and record daily symptoms. It also captures their implicit mood bias, and records their voice.
EMOTE also includes exercises that have been proven to improve mood in other populations. People with PD can do the exercises on their iPad, in an engaging video game-like environment that allows them to progress at their own rate, keeping the exercise not too easy (i.e., boring) nor too difficult (i.e., frustrating). It uses an online cloud-based portal, which provides feedback to people with PD about their mood and allows their health team to monitor progress and treatment.
Q. Why did you develop the app?
A. As a translational neuroscientist, I saw the need for a tool that can help us to continuously monitor and improve mood disorders, such as depression and anxiety, in people with PD.
Mood disorders are among the most common non-motor symptoms of PD. In fact, people with PD report negative mood as the most troublesome symptom in the progression of the disease, secondary only to fluctuating responses to medication. Mood impacts a person’s independence, employment and social networks. However, mood disorders are often under-diagnosed and therefore under-treated. Despite the fact that many people are reluctant to report depression or anxiety (given stigma or lack of awareness), they may only get properly diagnosed through self-report — when they identify it themselves. Plus, there is an overlap of symptoms with other aspects of PD, such as fatigue, that make mood disorders difficult to accurately diagnose in PD.
When it comes to treating mood and conducting research to find better treatments, we face additional obstacles. First, we see people with PD in the clinic, but not often enough, and only for short visits, which might not reflect their daily ‘real-world’ experiences. This limits our ability to provide treatments for symptom fluctuations between visits or to fully understand treatment effectiveness. When it comes to research studies, a major problem that dramatically reduces participation is that commuting to a research lab is burdensome for many people with PD. It may be difficult to drive or to find transportation to come see us for evaluation.
With all of this in mind, I saw the need for a better tool that can help us understand mood in PD even when we can’t see our patients, or they can’t come to us.
Q. Can you tell us about your research study and how the app might help people with PD?
A. To study the effectiveness of the app in monitoring and improving mood in PD, I partnered with Ms. Wanetick, a PDF Research Advocate and and co-president of the Parkinson Network of Mount Diablo (PNMD); Howard Zalkin, co-president of PNMD; and other members of PNMD. They helped us to test the app, provided key feedback on the software and are currently helping co-design a larger well-controlled follow-up study.
The app has many benefits because it allows people with PD to track their mood wherever they are, eliminating the need to travel to a clinic or research site for assessment. Our hope is that it will help improve diagnosis and treatment of mood disorders such as anxiety and depression in PD, by enabling both clinicians and patients to understand their symptoms and how those symptoms change over time, in between clinic visits. It will never replace medical care, but it is a tool that can complement and improve it. It also may improve recruitment for future clinical trials, allowing researchers and people with PD to use their time more efficiently and allowing us to reach people with PD who cannot travel.
Our plan is to initiate this larger trial in the spring. Following a successful trial, we will offer the app to other research groups and clinical collaborators and eventually to individuals with PD.
Q. PAIR Leadership Awards are awarded to scientists who work closely with people with PD. Can you tell us about the team of people living with PD helping with this research project? How have the insights of people with PD formed your project?
A. I am a big believer in the PDF philosophy that when we bring together two kinds of experts – the scientists who study PD and the individuals who live with it – we are likely to find better answers more quickly. It has been a fabulous opportunity for me to work with Ms. Wanetick, a PDF Research Advocate, and the people with PD who volunteered to participate in the first stage of this study. I have learned a lot and thoroughly enjoy working with this group.
I first met Ms. Wanetick when a group of PDF Research Advocates reached out to PD researchers at UC Berkeley, including myself, to enable more of the PD population to participate in research. A major point raised by the advocates as limiting research participation is the heavy burden of commuting to study sites. Ms. Wanetick and I were both especially interested in the potential advantage of bringing PD research projects directly to the homes of people with PD, with the thought that by eliminating commutes, we can reach a much wider audience, making the research more accessible to large numbers of participants. The PAIR Leadership Award enabled us to work together to make this come to fruition.
She provided important insight as did the wonderful participants who tested EMOTE. They identified glitches in the app and provided excellent feedback on app usability. They received feedback regarding their own performance on cognitive-emotional exercises and questionnaires. The information collected from this small-scale study has greatly benefited the last round of EMOTE app development, as we have already fixed glitches and made improvements, based upon their feedback, which will make it better for people with PD in the future.
We are excited and look forward for the next steps in our PAIRed research.
Dr. Stark-Inbar is a translational neuroscientist and senior scientist at Posit Science Corporation, where she leads research on neuroplasticity in populations with motor disabilities, as well as the development of new technologies and online/mobile games for the improvement of motor, cognitive and emotional states in people with Parkinson’s disease. She received her Ph.D. in Neuroscience from the Hebrew University of Jerusalem, Israel, using brain imaging to study basic questions in movement planning and execution and the effects of behavioral rehabilitation on brain function. During her postdoctoral research at the Cognition and Action lab of Dr. Rich Ivry at UC Berkeley, she studied motor learning in healthy adults.
Ms. Wanetick of Walnut Creek, CA, worked as a teacher for 20 years and trained as a PDF Research Advocate in 2008. She also serves as co-president of the Parkinson Network of Mount Diablo.
To learn more about PAIR Leadership Awards, visit our website here.