Seizure 2004; 13: 71 75 doi:10.1016/s1059-1311(03)00158-4 The perceived health status of people with psychologically derived non-epileptic attack disorder and epilepsy: a comparative study SUAD M. AL MARZOOQI, GUS A. BAKER, JAMES REILLY & PETER SALMON Departments of Clinical Psychology; Neurosciences, University of Liverpool; Department of Psychology, Aintree Hospital Liverpool, Liverpool, UK Correspondence to: Professor Dr Gus A. Baker, F.B.Ps.S., Professor of Clinical Neuropsychology, Department of Neurosciences, Walton Centre for Neurology and Neurosurgery, University of Liverpool, Lower Lane, Fazakerley, Liverpool L9 7LJ, UK. E-mail: g.baker@liverpool.ac.uk While a wealth of literature describes the short and longer term impact of living with epilepsy, there is, in contrast, very little information about the impact of psychologically derived non-epileptic attack disorder (PNEAD). In the absence of any physical disease, some clinicians may assume that this group requires little help. However, evidence suggests that there maybe a significant impact. Therefore, this study has set out to document the effects on perceived health status of PNEAD. We compared 97 people with PNEAD with a sample, case matched for age and gender, of 97 people who had been previously diagnosed with epilepsy. A questionnaire was administered to both groups requesting information about their perceived overall health (SF-36) and their clinical and demographic status. PNEAD patients described a significantly poorer profile of perceived health compared with the epilepsy group. People with PNEAD have substantially impaired perceived health status, to the extent of feeling in poorer health than people with organically explained epilepsy. Clinical interventions are necessary that can improve their perceived health. 2003 BEA Trading Ltd. Published by Elsevier Ltd. All rights reserved. Key words: epilepsy; non-epileptic attack disorder; pseudoseizures; psychologically derived non-epileptic attack disorder; non-epileptic seizures; health-status. INTRODUCTION Psychologically derived non-epileptic attack disorder (PNEAD) is increasingly recognised as a significant clinical problem 1. A failure to identify those with PNEAD can lead to a number of risks for such patients, including: polypharmacy and anticonvulsant toxicity, hazardous interventions, significant social and economic demands and a failure to treat the underlying cause appropriately 2. PNEAD has been linked with a number of possible explanations, including borderline and multiple personality disorder, post-traumatic stress disorder and Munchausen s Syndrome 3. Alternatively, Ford 4 argues that PNEAD is strongly associated with somatisation, defined as the expression of emotional discomfort and psychosocial stress in the language of bodily symptoms 5. Since patients with PNEAD have no physical pathology, it might be expected that their symptomatology and the wider impact of their disorder on their lives should be less than in patients with confirmed epilepsy. However, paradoxically, there is evidence that patients with persistent medically unexplained symptoms are, in fact, more impaired than patients with chronic and disabling medical conditions 6. Moreover, the incidence of psychological trauma is greater in patients with PNEAD and other unexplained symptoms than in patients with epilepsy or other organic conditions 7, and such trauma is likely to increase physical and emotional morbidity 8.Ina preliminary comparison, the authors have found that patients with PNEAD were, indeed, more distressed than patients with epilepsy on a range of psychological measures 9. Another report suggested that patients with PNEAD report more limitations in their physical 1059 1311/$30.00 2003 BEA Trading Ltd. Published by Elsevier Ltd. All rights reserved.
72 S. M. Al Marzooqi et al. health than patients with epilepsy 10. However, the samples were relatively small (n = 62 and 50) and in only one of the studies 9 were they matched for gender or age. Therefore, the present study compared large, matched groups of patients with PNEAD and epilepsy across a range of measures of perceived health status. The authors predicted that, in the present study, PNEAD patients would be more impaired than ageand gender-matched patients with epilepsy in both physical and psychological functioning. The findings of this study will therefore help to understand the wider impact of PNEAD. MATERIALS AND METHODS Patient selection Patients attending the Walton Centre for Neurology and Neurosurgery, Liverpool, for the assessment or treatment of PNEAD were invited to participate in the study. Patients with PNEAD were matched in terms of age and gender with patients with epilepsy. Patients with PNEAD were recruited via a specific clinic for people with PNEAD led by one of the authors (G.B.), to which they were referred from the neuropsychological outpatients clinics. Patients with epilepsy were recruited via the epilepsy outpatient clinics at the Walton Centre for Neurology and Neurosurgery. All patients with epilepsy or PNEAD were diagnosed by an experienced epileptologist on the basis of electroencephalographic results, video telemetry, clinical observations and psychological/psychiatric histories or a combination thereof. One hundred and thirty patients were initially recruited on the basis of the diagnosis of PNEAD made between 12 and 36 months previously. They were excluded from the study if they were also diagnosed with epilepsy (n = 18), were learning disabled (n = 6), or felt too unwell/or upset to complete the self-completed questionnaire (n = 1). Of the patients who met the inclusion criteria, two patients refused to fill out the questionnaire because they had no time (n = 2), or without stating a reason. Six patients started the questionnaire but failed to complete it and were therefore discarded. Ninety-seven patients with PNEAD were therefore included in the study. One hundred and fifty-three patients, with epilepsy diagnosed by a Consultant Neurologist in the previous 12 36 months period, were initially identified to form an age and matched comparative group. Patients with epilepsy were excluded if they were learning disabled (n = 7), or too distressed to participate (n = 14). A number of patients with epilepsy refused to complete the study questionnaire, stating that they had insufficient time (n = 20). Sixteen patients did not provide a reason for not participating. Responses were discarded for 15 people who started the questionnaire but failed to complete it. Ninety-seven patients with epilepsy were age and sex matched with the PNEAD sample. Data collection Each participant completed a battery of questionnaires, including the Short-Form-36 Health Survey (SF-36) 11, and other questionnaires not reported here. Information was also collected in respect of clinical and demographic details. The Short-Form-36 Health Survey (SF-36) The SF-36 was designed as a generic indicator of health status for use in evaluative studies of health policy. The SF-36 can be used as an outcome measure in clinical research and practice. The SF-36 measures both physical and psychological health. The SF-36 includes multi-item scales to measure eight dimensions (Physical Functioning, General Health, Bodily Pain, Fatigue, Mental Health, Social Functioning, Role Physical, Role Emotional Limitations). It is self-administered and takes 5 10 minutes to complete. Scoring transforms the answers of each question into scaled scores from 0 to 100 so that high values represent more favourable physical and psychological states 11. Statistical analyses Data were analysed using the statistical package for social sciences (SPSS 10.0). Student s t tests and Chi-square were used to examine the differences between groups in scores on the SF-36 and clinical and demographic features, including education, religion and employment status. RESULTS Details of the samples are summarised in Table 1. There were 97 patients in each of the PNEAD and epilepsy groups, who were of similar age (mean = 34); in both groups the number of female patients was greater than male (69/97 vs. 28/97 in each group). There were no statistical differences in marital status and religion. The number of PNEAD patients with one or more educational qualifications was lower than for the patients with epilepsy. There were significant differences between the two groups on a number of clinical variables, with PNEAD
Psychologically derived non-epileptic attack disorder 73 Table 1: Demographic characteristics of the PNEAD and epilepsy groups. PNEAD Epilepsy (n = 97) (n = 97) Marital status Single 37 39 Divorced/widowed 22 15 Married/living with partner 38 43 Employment Unemployed 22 19 Employed 24 32 Self-employed 34 28 Not seeking employment 17 18 Type of employment * Unemployed 69 65 Unskilled/shop work 15 25 Skilled 7 1 Professional 6 6 Education ** One or more formal qualifications 58 75 * P<0.05. ** P<0.01. patients more likely to report long-term health problems (χ 2 = 4.73, P<0.05), less likely to be taking antiepileptic medication (χ 2 = 69.37, P<0.001), and less likely to report partial seizures (χ 2 = 7.68, P<0.05) but more likely to report more frequent seizures (see Table 2). A comparison on the SF-36 revealed significant differences on several domains between the PNEAD and epilepsy patients. People with PNEAD reported worse scores than people with epilepsy on the Role Emotional (P <0.01), Mental Health (P <0.01), General Health (P = 0.008), Role Physical (P < 0.01), Bodily Pain (P <0.001) and Fatigue (P <0.001) domains. No significant differences were found between diagnostic groups for Physical or Social Functioning (Table 3). Table 2: Clinical characteristics of the PNEAD and epilepsy groups. PNEAD Epilepsy Features of attacks Generalised seizures 48 55 Absence seizures 34 42 Attacks with trance-like status * 22 40 Attacks of falling with brief loss 31 35 of consciousness Brief jerks of the body or arms 27 33 Seizure frequency * None in past year 5 22 Less than one a month 29 33 One or more a month 63 42 Receiving AED treatment * 20 78 Long-term health problems * 37 23 * P<0.05. Table 3: Mean scores on the SF-36 for the PNEAD and epilepsy groups. Domain PNEAD Epilepsy Role Emotional * 39.3 50.0 Mental Health * 26.0 55.6 General Health * 40.9 54.3 Physical Functioning 59.7 66.6 Social Functioning 56.8 61.3 Role Physical * 31.9 45.7 Bodily Pain ** 49.1 68.6 Fatigue ** 23.3 50.3 * P<0.01. ** P<0.001. Fig. 1 displays the SF-36 profile for the two groups and for a sample of people with long-standing health problems 12. DISCUSSION This study is unique in that it compared the subjective health complaints of patients with intractable epilepsy with patients with PNEAD matched for age and sex, in a relatively large cohort. Similarly to the previous but smaller study by Breier et al. 10, all but five patients with epilepsy in this study were experiencing uncontrolled seizures. All patients with either epilepsy or PNEAD had their diagnosis confirmed by epileptologists in a specialised epilepsy centre. The PNEAD group was similar to the epilepsy group on a number of clinical and demographic variables although they were more likely to be in skilled employment but less likely to possess educational qualifications than the patients with epilepsy. In terms of the clinical characteristics of reported seizures, the PNEAD group was less likely to report partial seizures but more likely to report frequent seizures than patients with epilepsy. Patients with PNEAD in this study reported a significantly poorer quality of life than patients with epilepsy as measured by the SF-36. The findings from the epilepsy group were typical of findings from previously published studies, which showed that people with epilepsy reported impairment in physical, social and psychological well-being 9. Interestingly, both groups reported health problems across the range of domains, with the PNEAD group reporting more significant difficulties for emotional role functioning, mental health functioning, general health functioning, physical role functioning, bodily pain and fatigue than the patients with epilepsy. In addition, the patients in the PNEAD group were more likely to report longterm health problems than the patients with epilepsy. These results suggest that people with PNEAD experience their lives as more disabling than people
74 S. M. Al Marzooqi et al. 100 90 80 70 60 50 40 30 20 10 0 Physical Functioning Social Functioning Role Physical Role Emotional Mental Health Energy and Vitality General Health Fatigue EPILEPSY PNEAD Long Standing Health problems Fig. 1: Comparison of mean scores for the SF-36 health status measure: for people with epilepsy, PNEAD and UK general population with long-standing illness. with chronic epilepsy arising from serious physical pathology. While the PNEAD group does not experience the significant physical, social and psychological sequealae associated with resistant epilepsy 13, 14, they do face difficult challenges that are likely to be associated with their childhood and family experiences (psychological, physical or sexual abuse) 15 21. The importance of this research is the recognition that this group of patients present with multifaceted physical and psychological problems that warrant substantial clinical intervention, from a multidisciplinary team with experience in managing this condition. We consider that there are two hypotheses that could explain why people with PNEAD report significantly more health problems than people with epilepsy: Reduced scores on the SF-36 in the PNEAD sample may be a reflection of their emotional distress expressed as physical health concerns. Alternatively, people with PNEAD, may in the absence of any physical pathology, exaggerate their poor health status in order to justify their level of disability. Testing these hypotheses should be the focus for future research. There are a number of limitations to this study that may affect the generalisability of the results and these include the following: The epilepsy group was biased towards people with more problematic epilepsy characterised by high seizure frequency and by the greater number of people who refused to participate because they were distressed. The reliance on the use of self-reported measures to assess perceived health status, that may not reflect actual behaviour. Psychiatric measures were not used to assess the potential influence of psychiatric conditions on self-reported health status. However, the SF-36 has been used widely and is regarded as a valid and reliable measure of perceived health status. Therefore, accepting these limitations, the results highlight the perceived wide-ranging level of disability in patients with PNEAD. In conclusion, this study has shown that, by comparison with patients with resistant epilepsy, patients with PNEAD reported a significantly worse health status and long-term health problems. This was despite the fact that they had all been diagnosed with PNEAD and only relatively small proportions were taking antiepileptic medication. These results highlight the challenge that clinicians must face when managing people with this condition and the benefits from understanding the wider impact of the condition for both physical and psychological functioning. Further research and clinical intervention is warranted to understand what factors are important in the development and maintenance of this condition and what interventions may ameliorate its impact. REFERENCES 1. Betts, T. and Boden, S. Diagnosis, management and prognosis of a group of 128 patients with non-epileptic attack disorder. Part II. Previous childhood sexual abuse in the aetiology of these disorders. Seizure 1992; 1: 27 32. 2. Baker, G. A., Moore, P. and Appleton, R. Non-epileptic attack disorder in adolescent and children: a single case study. Seizure 1995; 4: 307 309. 3. Gates, J. R. and Erdhal, P. Classification of non epileptic events. In: Non-epileptic Seizures (Eds J. A. Rowan and J. R. Gates). Boston, Butterworth Heineman 1993: pp. 21 30. 4. Ford, C. V. Somatisation and non-epileptic seizures. In: Non-epileptic Seizures (Eds J. A. Rowan and J. R. Gates). Boston, Butterworth Heinemann, 1993: pp. 153 164. 5. Barskey, A. J. and Klerman, G. L. Overview: hypochondriasis, bodily complaints and somatic styles. The American Journal of Psychiatry 1983; 45: 237 244. 6. Stanley, I. M., Peters, S. and Salmon, P. A primary care perspective on prevailing assumptions about persistent medically unexplained physical symptoms. International Journal of Psychiatry in Medicine 2002; 32: 125 140. 7. Fleisher, W., Staley, D., Krawetz, P., Pillay, N., Arnett, J. L. and Maher, J. Comparative study of trauma-related phenomena in subjects with pseudoseizures and subjects with epilepsy. The American Journal of Psychiatry 2002; 159 (4): 660 663. 8. Reilly, J., Baker, G. A., Rhodes, J. and Salmon, P. The associations and physical abuse with somatization: characteristics
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