Psychogenic non-epileptic seizures (PNES) on the Internet: Online representation of the disorder and frequency of search terms

Myers, Lorna; Jones, Jace W.; Boesten, Nadine; Lancman, Marcelo E.

doi:10.1016/j.seizure.2016.06.018

Cited by 17 publications

(3 citation statements)

References 27 publications

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“…A study conducted in 2011 uncovered the stigma associated with epilepsy on Twitter, as 41% of tweets related to "seizure" were seen to be derogatory in nature [39]. Similar studies have also noted the use of pejorative tweets referring to psychogenic nonepileptic seizures, even by professionals [40]. Sirven et al called for a Twitter revolution to alter the way in which we perceive seizures [41].…”

Section: Awareness Campaignsmentioning

confidence: 99%

Use of Twitter in Neurology: Boon or Bane?

Mishra¹,

Saini²,

Doherty³

et al. 2021

J Med Internet Res

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Twitter is a free, open access social media platform that is widely used in medicine by physicians, scientists, and patients. It provides an opportunity for advocacy, education, and collaboration. However, it is likely not utilized to its full advantage by many disciplines in medicine, and pitfalls exist in its use. In particular, there has not been a review of Twitter use and its applications in the field of neurology. This review seeks to provide an understanding of the current use of Twitter in the field of neurology to assist neurologists in engaging with this potentially powerful application to support their work.

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Section: Awareness Campaignsmentioning

confidence: 99%

Use of Twitter in Neurology: Boon or Bane?

Mishra¹,

Saini²,

Doherty³

et al. 2021

J Med Internet Res

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show abstract

“…Our tool provides the patient with the most important, essential information about PNES, including the relevant obstacles from the health care system. Our DEM-1-pager is not meant to replace available comprehensive and often time-consuming information either published on paper or online [ 39 ]; rather, it is meant to be complementary to these valuable resources. Ideally, it can be used in the initial communication between PNES patients and health care professionals.…”

Section: Dem-1-pager To Ease Communication In Health Carementioning

confidence: 99%

Document-Engineering Methodology in Health Care: An Innovative Behavioral Science–Based Approach to Improve Patient Empowerment

Pohlmann‐Eden

Eden²

2020

JMIR Hum Factors

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Engaging patients in their treatment and making them experts of their condition has been identified as a high priority across many medical disciplines. Patient empowerment claims to improve compliance, patient safety, and disease outcome. Patient empowerment may help the patient in shared decision making and in becoming an informed partner of the health care professional. We consider patient empowerment to be in jeopardy if written medical information for patients is too complex and confusing. We introduce document-engineering methodology (DEM) as a new tool for the health care industry. DEM tries to implement principles of cognitive science and neuroscience-based concepts of reading and comprehension. It follows the most recent document design techniques. DEM has been used in the aviation, mining, and oil industries. In these very industries, DEM was integrated to improve user performance, prevent harm, and increase safety. We postulate that DEM, applied to written documents in health care, will help patients to quickly navigate through complex written information and thereby enable them to better comprehend the essence of the medical information. DEM aims to empower the patient and help start an informed conversation with their health care professional. The ultimate goals of DEM are to increase adherence and compliance, leading to improved outcomes. Our approach is innovative, as we apply our learning from other industries to health care; we call this cross-industry innovation. In this manuscript, we provide illustrative examples of DEM in three frequent clinical scenarios: (1) explaining a complex diagnosis for the first time, (2) understanding medical leaflet information, and (3) exploring cannabis-based medicine. There is an urgent need to test DEM in larger clinical cohorts and for careful proof-of-concept studies, regarding patient and stakeholder engagement, to be conducted.

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“…Discriminatory behavior from providers can range from taking a defensive stance while communicating with patients 8 , 13 to making jokes and negative comments about FND patients on social media 14 . Despite the growing scientific and medical literature on FND, the attitudes of physicians are slower to evolve 15 , 16 . Patients with FND directly experience the consequences of these negative attitudes: in a survey conducted by an FND advocacy organization (FND Hope), 85% of patients reported feeling disbelieved and disrespected when visiting a medical professional ().…”

mentioning

confidence: 99%

Stigma and functional neurological disorder: a research agenda targeting the clinical encounter

et al. 2020

Self Cite

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Stigma against patients with functional neurological disorder (FND) presents obstacles to diagnosis, treatment, and research. The lack of biomarkers and the potential for symptoms to be misunderstood, invalidated, or dismissed can leave patients, families, and healthcare professionals at a loss. Stigma exacerbates suffering and unmet needs of patients and families, and can result in poor clinical management and prolonged, repetitive use of healthcare resources. Our current understanding of stigma in FND comes from surveys documenting frustration experienced by providers and distressing healthcare interactions experienced by patients. However, little is known about the origins of FND stigma, its prevalence across different healthcare contexts, its impact on patient health outcomes, and optimal methods for reduction. In this paper, we set forth a research agenda directed at better understanding the prevalence and context of stigma, clarifying its impact on patients and providers, and promoting best practices for stigma reduction.

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Psychogenic non-epileptic seizures (PNES) on the Internet: Online representation of the disorder and frequency of search terms

Cited by 17 publications

References 27 publications

Use of Twitter in Neurology: Boon or Bane?

Use of Twitter in Neurology: Boon or Bane?

Document-Engineering Methodology in Health Care: An Innovative Behavioral Science–Based Approach to Improve Patient Empowerment

Stigma and functional neurological disorder: a research agenda targeting the clinical encounter

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