Parental Ranking of Terms Describing Nonepileptic Events

Morgan, Lindsey A.; Dvorchik, Igor; Williams, Korwyn; Jarrar, Randa; Buchhalter, Jeffrey

doi:10.1016/j.pediatrneurol.2012.12.029

Cited by 27 publications

(33 citation statements)

References 25 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These studies have shown that "functional" and "stress related" were preferred above other terms, though "non-epileptic" was favoured for non-epileptic seizures [20,21,27]. All considered the word in isolation from its possible explanation, and did not consider psychiatric terms.…”

Section: Accepted M Manuscriptmentioning

confidence: 99%

What should we say to patients with unexplained neurological symptoms? How explanation affects offence

Ding

Kanaan

2016

Journal of Psychosomatic Research

View full text Add to dashboard Cite

Please cite this article as: Ding Juen Mei, Kanaan Richard Antony Alexander, What should we say to patients with unexplained neurological symptoms? How explanation affects offence, Journal of Psychosomatic Research (2016Research ( ), doi:10.1016Research ( /j.jpsychores.2016 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Tables: 3 Figures: 3 References: 27 A C C E P T E D M A N U S C R I P T ACCEPTED MANUSCRIPT A C C E P T E D M A N U S C R I P T ACCEPTED MANUSCRIPT A C C E P T E D M A N U S C R I P T ACCEPTED MANUSCRIPT ABSTRACTObjectives: Unexplained neurological symptoms (UNS) are common presentations in neurology but there is no consensus as to what they should be called. This is important, as patient acceptance is a predictor of outcome and there is evidence that patients are unhappy with the terms used. Patient understanding of these terms may be limited, however, and, once explained, the terms may seem more or less offensive. We sought to elicit patients" views of 7 frequently used terms for UNS, and whether these changed once definitions were provided.Methods: 185 participants were recruited from a medical outpatients" waiting area. They were given questionnaires outlining a hypothetical situation of leg weakness, with 7 possible labels.Participants were asked whether they endorsed 4 connotations for each label and the "number needed to offend" (NNO) calculated, before and after definitions were given.

show abstract

Section: Accepted M Manuscriptmentioning

confidence: 99%

What should we say to patients with unexplained neurological symptoms? How explanation affects offence

Ding

Kanaan

2016

Journal of Psychosomatic Research

View full text Add to dashboard Cite

show abstract

“…This communication should pay special attention to the connotation of the language being used [16 – 19]. Although we have selected to use PNES as the disease label for this paper, clinical judgment needs to be used in selecting the best descriptor for patients and families that highlights transparency and honesty, with avoidance of stigma and negative emotional response [19]. …”

Section: Ethics In Diagnosing and Communicating The Pnes Diagnosismentioning

confidence: 99%

Ethical dilemmas in pediatric and adolescent psychogenic nonepileptic seizures

Cole

Falcone

Caplan

et al. 2014

Epilepsy & Behavior

View full text Add to dashboard Cite

To date only a very narrow window of ethical dilemmas in psychogenic non-epileptic seizures (PNES) have been explored. Numerous distinct ethical dilemmas arise in diagnosing and treating pediatric and adolescent patients with PNES. Important ethical values at stake include trust, transparency, confidentiality, professionalism, autonomy of all stakeholders and justice. In order to further elucidate the ethical challenges in caring for this population, an ethical analysis of the special challenges faced in four specific domains is undertaken: (1) conducting and communicating a diagnosis of PNES; (2) advising patients about full transparency and disclosure to community including patients’ peers; (3) responding to requests to continue anti-epileptic drugs; and (4) managing challenges arising from school policy and procedure. An analysis of these ethical issues is essential for the advancement of best care practices that promote the overall well-being of patients and their families.

show abstract

“…Nor have they been compared to those found in relatives of patients with ND. Morgan et al [16] examined how the parents of children with seizures perceived PNES terminology and how this would affect their trust in the doctor.…”

mentioning

confidence: 99%

Differences in relatives' and patients' illness perceptions in functional neurological symptom disorders compared with neurological diseases

Whitehead

Stone

Norman

et al. 2015

Epilepsy & Behavior

View full text Add to dashboard Cite

ObjectiveThe illness perceptions of the relatives of patients with functional neurological symptom disorders (FNSD) have been little studied.We aimed to compare illness perceptions of relatives of patients with FNSD to those held by patients themselves. We used control pairs with neurological diseases (ND) to examine the specificity of the findings to FNSD. Material and methodsPatients with FNSD (functional limb weakness and psychogenic non-epileptic seizures) and patients with ND causing limb weakness and epilepsy, and their relatives, completed adapted versions of the Illness Perception Questionnaire Revised (IPQ-R). ResultsWe included 112 pairs of patients with FNSD and their relatives and 680 ND patient and relative pairs. Relatives of patients with FNSD were more likely to endorse psychological explanations and, in particular stress as a causal factor than patients with FNSD (p <.001).Relatives of FNSD patients were also more pessimistic about the expected duration of the disorder and perceived a greater emotional impact than patients themselves (p <.001).However, the latter two differences between patients and relatives were also found in ND pairs. ConclusionThe main difference in illness perceptions between relatives and patients with FNSD was a tendency for relatives to see psychological factors as more relevant than patients. Some oOther differences were observed between FNSD relatives and patients but the same differences were also seen in ND pairs. These other differences were therefore not and are therefore not specific to FNSD. Discussion about possibly relevant psychological factors with patients suffering from FNSD may be helped by including relatives.

show abstract

Parental Ranking of Terms Describing Nonepileptic Events

Cited by 27 publications

References 25 publications

What should we say to patients with unexplained neurological symptoms? How explanation affects offence

What should we say to patients with unexplained neurological symptoms? How explanation affects offence

Ethical dilemmas in pediatric and adolescent psychogenic nonepileptic seizures

Differences in relatives' and patients' illness perceptions in functional neurological symptom disorders compared with neurological diseases

Contact Info

Product

Resources

About