NeuroVoices: Kelly Papesh, DNP, APRN, FNP-BC, on Understanding Patient Silence for Movement Disorder Concerns in the Clinical Setting


The executive director of the Association of Movement Disorder Advanced Practice Providers talked about a recent survey highlighting why patients with movement disorders may withhold critical health information from their providers.

Kelly Papesh, DNP, APRN, FNP-BC  (Credit: ATMRD)

Kelly Papesh, DNP, APRN, FNP-BC

(Credit: ATMRD)

In the clinical setting, asking the right questions can provide more relevant details about patients’ disease states, including concerns about symptoms or adverse effects from treatments, ultimately enhancing patient outcomes and quality of life. In a recent anonymous survey of patients with movement disorders, many reported withholding certain symptoms or experiences of their condition from their healthcare provider, although most believed that sharing this information could be beneficial for addressing their problems.1 Factors such as limited office visit time, communication barriers, increasingly complex symptoms, polypharmacy, and patient discomfort contribute to why patients withhold actionable information from their providers.

At the 3rd Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, hosted by the PMD Alliance from June 22-25, 2024, Kelly Papesh, DNP, APRN, FNP-BC, and colleagues held a panel discussion with patients and care partners about their experiences with effective communication in the clinic and the impact of treatment on their disease. During the discussion, Papesh and other speakers addressed how clinicians can more effectively prompt patients for information they need to ultimately provide better care and create a safer space for patients to share details. Additionally, the panelists shared alternative methods for patients to document and convey data to their providers.

In a new iteration of NeuroVoices, Papesh, executive director of the Association of Movement Disorder Advanced Practice Providers (AMDAPP), sat down with NeurologyLive® during the Congress to discuss the most common reasons patients may withhold information from their healthcare providers. Papesh, who also serves as a nurse practitioner and the clinical director at PMD Alliance, talked about how healthcare providers create a more comfortable environment for patients to share sensitive information. Moreover, she spoke about some other specific topics that patients may be the most likely to withhold from their providers and how to establish more effective communication with their patients.

Top Clinical Takeaways

  • Approximately 82% of patients admitted to withholding information from their providers, often because of fear, embarrassment, or feeling like a burden.
  • Commonly withheld patient concerns may include sexual dysfunction, urinary symptoms, and other autonomic dysfunctions.
  • Building trust, asking open-ended questions, and dedicating effective time can enhance patient-provider communication and ensure better management of hidden symptoms.

NeurologyLive: Could you provide an overview of the presentation from ATMRD 2024 and explain the objective for the survey?

Kelly Papesh, DNP, APRN, FNP-BC: The title says it all, “Lips Sealed: What Our Patients Aren't Telling Us.” We're trying to find out what patients are withholding or not disclosing to their providers. We know that there's many topics that are either out of fear or embarrassment or they're scared to share it, they withhold information. We're trying to understand what they're withholding and why and because of that, we ended up creating an entire topic discussion around that.

We put together a live virtual webinar for patients and care partners, people living with PD or their loved ones, and we asked them to please fill out this survey. We sent out the survey and asked, what are you withholding? And what are the reasons for that? Then we held this webinar, and we interacted. We had Yasar A. Torres Yaghi, MD and myself on that, and we just talked with the group about some of the results from the survey. It was pretty eye opening, as82% of people said that they were withholding something from their provider. Although the majority said, even though we're withholding, we know that it probably be beneficial if we shared it.

What are the implications of these findings from the survey and what can be done to have better communication in the patient-provider relationship?

Some of the biggest reasons for not disclosing was because of, like I mentioned, fear or embarrassment of the topic. Or people even said, “if I tell my provider, I don't think anything is going to change, I feel like I'm a burden to them. They don't have time to listen to all of my symptoms or complaints we had.” People tell us that what they're withholding. A lot of things happen to be under the autonomic dysfunction or sexual dysfunction—which can be a really difficult topic to talk about—either hypersexuality or erectile dysfunction or sexual dysfunction, sometimes urinary symptoms, urinary incontinence, because it can be embarrassing or a difficult thing to bring up.

What we're finding is that as providers, if we're not asking the questions, we're not going to get the answers, and we don't know how to treat or manage something that we aren't being told. So we have to figure out how to better communicate, more effective communication with our patients, and how can we as a team, then come to an understanding of what their challenges are. We're hoping that through things like this, such as the presentation and the poster presentation, it reminds other clinicians and providers that the person sitting in front of you is just not just a patient, not just someone living with PD, but a human being. If you build that trust, you build the connection, and you build that relationship, it really sets a great foundation to be able to trust them, answer the questions, say the hard topics, and want to share with you when there's something that typically they may withhold.

Do you feel that it is better to ask open-ended questions with patients instead of short-ended ones?

Absolutely. We ask on a lot of our surveys and questionnaires yes or no answers or check if you experience this, but it doesn't give the person the opportunity to say more. Asking that open ended question, of course, promotes effective communication. It's drawing out what they actually are afraid of, what they actually are bothered by, and working together to like mitigate that. But if we ask them just a yes or no question, it's a lot easier, especially if they're feeling already like I don't have enough time, I'm a burden for them just to say no. Our goal is to ask the question where they're prompted to answer.

You also mentioned a space where they feel comfortable sharing. It's a huge thing to have a safe space, and that goes back to getting on an equal playing field and making sure that we're all human in this room together. How do I effectively talk to my patients in front of me, but communicate that we're all human? So let's get to know each other first. Let's set a foundation where we can feel like I trust you or I want to share and vice versa. Once we feel that way, are they more likely to share? And I think the answer is yes.

There's a lot of things that come into that. Even though cultural sensitivity, the language barriers, gender preferences, and many other things, there's always that trust and amount of time that someone gives you. We heard a lot of “We know providers don't give us a lot of time in clinic.” We know they're always running late, but if you walk in and you look at me and you give me the time that I need, even if it's only 10 minutes, it's effective, it matters. It's a really important pearl to remember, dedicate your time, give them your active listening, and that's how you're going to build that trust and rapport with your patients.

Do you feel in the patient-provider relationship it is important to help one another to build that trust and ultimately provide quality of care?

Absolutely, it's a team effort. We all work together on this, right? And it does go both ways. We don't know what the patients aren't telling us, if their lips are sealed, but at the same time, are we even trying? Are we pulling out of them? Are we asking the right questions? How can we do better? Because it is often those non motor or the hidden features and symptoms that make the biggest wave in somebody's day where we need to help, do what we can to manage and treat those.

Was there anything else that you wanted to close off with regarding this presentation or your time here at ATMRD?

When I look at this entire initiative, it matters. Our incredible team, led by Anissa Mitchell at PMD Alliance, has led this poster session and the main didactic session for our community here at ATMRD, but we're hoping to extend it and create this into a longer survey. It's so important. And our patients that we surveyed are saying, “Yes, can we tell you now?” They're giving us information that is eye opening, and we've been blown away by what we're hearing, as far as what they are struggling to communicate to us. I think, for me as a clinician, it matters so much, because I take with me every single piece that I hear from all the voices in the survey. I would bring that into a clinic setting, and I hope that that's what we can give to all of the providers here as well.

Transcript edited for clarity. Click here to view more NeuroVoices.

1. Mitchell A, Papesh K, Pagan F, Torres-Yaghi Y, Zeilman P. Lips Sealed: What Your Patients Aren't Telling You. Presented at: ATMRD; June 22-25, 2024; Washington, DC.
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