Bridging the Parkinson Patient Experience and Clinical Care Through Initiatives Geared Toward Empathy: Anissa Mitchell, LCSW

WATCH TIME: 6 minutes

"We also really try to infuse the patient's voice into ATMRD and give that experiential opportunity—through something like this—to experience that feeling and build empathy. I think most [clinicians] care very much, and they're very compassionate, but have to step in and experience some of these things."

Patient disclosure may be considered critical for effective clinical care in Parkinson disease (PD), especially for addressing nonmotor symptoms and individualized treatment needs for patients. A recent study reported that patients with PD and their care partners often withheld information from providers such as concerns about symptoms or palliative care because of embarrassment, fear, or uncertainty about what could be relevant to share. The study underscored the importance of fostering open communication and suggested that involving care partners during clinical encounters could help surface issues patients may hesitate to disclose on their own.¹

Another prior study focused on the communication barriers surrounding OFF periods in PD, revealing that patients frequently struggled to report fluctuations in symptoms or medication effectiveness to providers. Cognitive challenges, fear of judgment, or lack of understanding of how their experiences relate to treatment all contributed to limited disclosure. The findings suggest that clinicians who use structured tools such as symptom diaries and adopt an empathetic, patient-centered communication style can encourage more honest and detailed reporting. This proactive approach could be essential to optimize treatment plans, address hidden symptoms, and improve the overall quality of care for patients living with PD.²

Building on the importance of open communication in clinical care, Anissa Mitchell, LCSW, and several other experts recently led clinicians through a hands-on learning experience designed to simulate both motor and nonmotor symptoms of PD and related disorders. This educational session, took place at the 4th Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 27-30, 2025.³ Ahead of the event, Mitchell, chief program officer at PMD Alliance, spoke with NeurologyLive^® about the session’s goals. In the conversation, she emphasized how the program sought to highlight the influence of provider communication on patient disclosure and to explore common challenges patients may encounter when discussing their health concerns.

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REFERENCES
1. Ayele R, Macchi ZA, Jordan S, Jones J, Kluger B, Maley P, Hall K, Sumrall M, Lum HD. Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson's disease. PEC Innov. 2024 Jan 22;4:100255. doi: 10.1016/j.pecinn.2024.100255. PMID: 38304553; PMCID: PMC10832496.
2. Armstrong MJ, Rastgardani T, Gagliardi AR, Marras C. Barriers and facilitators of communication about off periods in Parkinson's disease: Qualitative analysis of patient, carepartner, and physician Interviews. PLoS One. 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384. PMID: 30998707; PMCID: PMC6472878.
3. Papesh K, Mitchell A, Labib-Kiyarash E, et al. Empathy in Action Breakfast: Multi-Sensory Experiential Hands-On Session. Presented at: ATMRD; June 27-30, 2025; Washington, DC.