Newly diagnosed psychogenic nonepileptic seizures: Health care demand prior to and following diagnosis at a first seizure clinic
Highlights
► Health care demand was assessed in patients with newly diagnosed psychogenic nonepileptic seizures. ► Health care demand from symptom onset to diagnosis (mean: 7.3 months) and to 6 months postdiagnosis was measured. ► There was a 94.1% reduction in emergency department visits postdiagnosis. ► There was a 100% reduction in hospital admissions postdiagnosis. ► Immediate health care demand reduction suggests that the relationship between presenting diagnosis and health care demand reduction is causal.
Introduction
Psychogenic nonepileptic seizures (PNES) are paroxysmal events that resemble epileptic seizures but are not associated with measurable changes in brain electrical activity. PNES have a presumed or known psychological cause. The incidence of PNES is estimated to be 1.4 to 4.9 per 100,000 per year [1], [2], [3]. Prevalence is estimated at between 2 and 33 per 100,000 [4]. Approximately one-fifth of patients referred with new-onset events and 20–25% of all patients referred to specialist epilepsy clinics have PNES [3], [5]. PNES are associated with heavy demand on both emergency and non-emergency health care services [6], [7].
Outcome in terms of reduction in attacks is thought to be poor, but it has been reported that establishing PNES diagnosis even several years after onset is associated with reduction of PNES-related use of emergency services by 69%, and of diagnostic test costs, by 76% [7], [8], [9]. This may be partly explained by the fact that reduction in emergency health care demand occurs in many patients even if they continue to have PNES [9]. A randomized controlled trial (RCT) has provided evidence that reduction in ambulance calls and emergency department (ED) attendance is causally linked to withdrawal of antiepileptic drugs (AEDs) [10]. Other factors, however, must also be in play: in the study of McKenzie et al., those patients who ceased using emergency services did so immediately after diagnosis (i.e., before withdrawal of AEDs), suggesting a specific therapeutic effect of communicating the diagnosis to the patient, relatives, or both [9]. This may nonetheless be consistent with the results of the RCT of Oto et al., if withdrawal of medication is understood by patients and relatives as underlining and confirming the verbally communicated diagnosis [10].
A recent study of outcome in patients with recent-onset PNES found that 50% of patients were free of PNES in the 3 months following communication of the diagnosis [1]. We hypothesized that this high rate of initial remission was due at least partly to the short latency to diagnosis and lack of AED treatment and, this being the case, that we could expect similarly large reductions in health care demand (HD) in a similar group of patients.
Section snippets
Methods
We carried out a prospective audit of all patients diagnosed with PNES at the first seizure clinic for the NHS Ayrshire and Arran Health Board (West of Scotland) over a 12-month period (1 March 2009 to 28 February 2010 inclusive). Patients are referred to the clinic by primary and secondary care clinicians, and the clinic accepts patients with new-onset attack disorders that are untreated and not yet investigated. It is the only such clinic for the catchment area, and serves a population of
Results
During the audit period, a total of 261 new patients were assessed at the first seizure clinic, of whom 28 patients (20 women, age: 34 ± 16 years) were diagnosed with PNES, an incidence of 7.6/100,000/year. Mean duration of PNES prior to clinic attendance was 7.3 ± 8.1 months. Twenty-four of 28 had had PNES for less than 1 year. In 24 of 28, the diagnosis was confirmed by SVEEG recording of typical attacks. In 2 of 28, PNES was confirmed on ambulatory EEG, which captured attacks confirmed as typical
Discussion
We observed an impressive and immediate reduction in HD after diagnosis of PNES. There were 94.1 and 100% reductions in the proportions of patients with ED visits at the 3- and 6-month follow-ups, respectively. There was complete cessation of hospital admissions in all our patients up to 6 months postdiagnosis.
A previous study by McKenzie et al. of patients with more chronic PNES (mean diagnostic delay: 7.0 years) reported that use of emergency medical services by 187 patients dropped from 49.7
Ethical approval
This audit was registered with the Clinical Governance Unit of NHS Ayrshire and Arran.
Conflict of interest statement
None of the authors has any conflict of interest to disclose.
Acknowledgments
Sandra Lightbody, Clinical Physiologist, Crosshouse Hospital, Kilmarnock, Scotland, is acknowledged.
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