Objective: This study investigates the dystonic patient experiences during the first wave of the ongoing pandemic in Italy, especially their feelings toward the general situation and the changes in medical care.
Background: Since the beginning of the SARS-CoV2 pandemic, Italy became one of the main hot-spots with a heavy impact on daily life and the healthcare system. A massive effort was spent to tackle the pandemic, while chronic diseases were at risk of being neglected, in particular rare ones, such as dystonia.
Method: An online survey consisting of 37 items about demographic, clinical and qualitative information, such us dystonia feature and management, relationship with services, quarantine experience, perceptions and unmet needs during the pandemic, was posted online, and participants were anonymously recruited. Demographic and dystonic-related information were analysed with descriptive statistics, while qualitative findings with framework analysis.
Results: Responses from 62 participants were collected. Many of the participants reported that the emergency triggered negative feelings. In several cases, symptoms worsening during the lockdown, with the need to contact the neurologist, were also described. Even if information and help were given by email or telephone, relevant needs remained unmet. The participants perceived that many chronic diseases treatments were neglected, including those for dystonia. They outlined their preoccupations about the suspension of botulin toxin injection, deep brain stimulation follows-up and rehabilitation session shutdown.
Conclusion: The study highlighted how the first-wave pandemic harmed people living with dystonia, with needs remained unmet. These findings, hopefully, might increase awareness of dystonia as a rare and fragile condition. Moreover, telemedicine could have a crucial role in satisfying some dystonic patient needs, although some in-person clinical activities should be guarantee even in case of health emergencies, like a pandemic.
To cite this abstract in AMA style:
S. Coniglio, G. Di Rauso, V. Rispoli, M E. Díaz Crescitelli, F. Cavallieri, F. Antonelli, S. Meletti, L. Ghirotto, F. Valzania. Living with dystonia during first-wave of COVID-19 pandemic: a Framework Analysis of Open-Ended Survey Questions [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/living-with-dystonia-during-first-wave-of-covid-19-pandemic-a-framework-analysis-of-open-ended-survey-questions/. Accessed May 13, 2025.« Back to MDS Virtual Congress 2021
MDS Abstracts - https://www.mdsabstracts.org/abstract/living-with-dystonia-during-first-wave-of-covid-19-pandemic-a-framework-analysis-of-open-ended-survey-questions/