Survey Reveals Barriers to Symptom and Concern Disclosure in Movement Disorders


Approximately 83% of patients reported that they did not disclose to their provider that they experienced symptoms or had concerns about living with a movement disorder.

Anissa Mitchell, LCSW  (Credit: PMD Alliance)

Anissa Mitchell, LCSW

(Credit: PMD Alliance)

Although a large portion of patients reported that they withheld certain symptoms or experiences of a movement disorder from their healthcare provider in a short anonymous survey, most believed that disclosure could be beneficial in addressing their problems.1 These results provide insight into the various symptoms or issues patients withhold disclosure, why they are not disclosing these concerns or symptoms, their perception of efficacy of sharing if they could overcome these barriers, and what would help improve communication.

In the survey, 83% (n = 72) of respondents reported they withheld information from their healthcare provider. The main symptoms or concerns withheld included mood and other emotional issues such as grief and anger (21%), autonomic nervous system related symptoms (21%) including gastrointestinal (25%) urinary issues/incontinence (31%), and sexual dysfunction (44%). Additional concerns or symptoms included cognitive changes (15%), self-perception (12%) and other psychosocial issues including lack of support and relationship dynamics (12%), lessor noted symptoms such as falls/mobility issues and impulse control disorders.

“The challenges to overcoming stigma around certain topics highlight the importance of deeper conversations approached with empathy, the education of providers on patient perception of and understanding around certain symptoms and the approach to management to reduce fear and embarrassment, and the use of multidisciplinary team experts such as psychiatry, psychology and social work,” lead author Anissa Mitchell, LCSW, the chief program officer at Parkinson & Movement Disorder Alliance (PMD Alliance), and colleagues wrote.1

READ MORE: ND0612 Reduces OFF Time for Motor Fluctuations in Parkinson Disease at 12 Months

Top Clinical Takeaways

  • A significant portion of patients with movement disorders reported withholding symptoms from their healthcare providers.
  • Commonly withheld symptoms included emotional issues, gastrointestinal and urinary problems, sexual dysfunction, cognitive changes, and psychosocial concerns.
  • Patients believed that improved clinician communication, empathy, and a multidisciplinary approach could help overcome barriers to disclosure and enhance their quality of life.

Presented at the 3rd Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 22-25, 2024, researchers distributed the survey among patients and care partners through PMD Alliance in partnership with Medstar Georgetown University with an educational program to address this topic for patients and caregivers. The program included dialogue and polling to provide additional qualitative data. Examples of responses from the survey included, “I am not honest about how many times I fall because it makes me feel like a failure. I don't talk about bladder issues because it's embarrassing,” and, “I am caught in a web of dishonesty. Healthcare providers should worry more about my quality of life and less about my ‘safety.’”

Further findings showed that barriers reported in the responses included embarrassment, fear of provider response, feeling dismissed, and denial/minimization of symptoms. When participants were asked if they believed sharing these concerns with their clinicians would help, 34% responded yes, 48% reported maybe and 17% said no. The solutions they indicated as being most beneficial to improve disclosure included clinicians taking more time, using tools to help in fragile conversations and enhance the frequency of communication. The respondents also noted that it would be helpful if there was a willingness for providers to go deeper and have better listening as well as communication skills.

“This small survey examining what patients are withholding from healthcare providers is ongoing with the hope to gain greater insight and opportunity to develop strategies that bridge the communication gap and improve treatment and quality of life,” Mitchell et al noted.1

Research shows that Parkinson disease and other movement disorders can lead to more than the known motor symptoms. Studies reveal that the nonmotor symptoms are often the largest contributor to disability or reduced quality of life among patients. Although disease and medications contribute to unpleasant symptoms or adverse effects, many could be addressed by medication adjustment, education, and a multidisciplinary team approach. However, if patients withhold information from their provider, this can impact appropriate treatment and management. Currently, there is limited research on factors that impact disclosure of certain symptoms or experiences, which symptoms are being withheld, or what might influence disclosure.

Click here for more coverage of ATMRD 2024.

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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