This study sought to explore the relationship between social factors (socio-demographic characteristics and stigma perceptions) and the HRQoL of adults with NES. Participants were found to experience high levels of perceived stigma which was inversely correlated with HRQoL. Stigma perceptions were most strongly associated with the HRQoL domains seizure worry, emotional wellbeing, and social functioning. HRQoL was better amongst those in employment or education than those who were not.

The levels of perceived stigma reported by our participants (mean 4.9) are considerably higher than typically found in epilepsy patient populations. A study of 314 people with epilepsy using the same measure reports a mean score of 3.7 []. Similarly, a recent study using a single four-point Likert scale question taken from the NEWQOL-6D (How much do you feel people treat you as an inferior person?), found that perceived stigma was significantly higher among individuals with NES compared to those with epilepsy []. These findings fit with the wider literature, which suggests that people with functional somatic syndromes experience greater perceived stigmatisation than those with comparable organic disease [].

The association of stigma with self-management and perceptions of health care among adults with epilepsy.

The stigma of epilepsy is widely reported, and is consistently linked to reduced HRQoL []. To our knowledge, ours is the first study to explore associations between HRQoL and stigma among adults with NES. A significant and moderate inverse correlation was observed; suggesting higher perceptions of stigma contribute to poorer HRQoL among those with the condition. Stigma perceptions were found to be most strongly associated with seizure worry, emotional wellbeing, and social functioning HRQoL domains; with over one-half of the variability related to these features. There is a dearth of research exploring the social stigma of NES, but peripheral findings from previous studies broadly corroborate our findings. Studies show that people with NES can experience feelings of shame [], blame and stigmatisation []; and might conceal the condition and isolate themselves to avoid potential adverse social reactions to seizures and feelings of embarrassment []. On-going support from family, friends and colleagues has been described extremely important in counteracting the social isolation associated with NES [].

Changing the diagnosis from epilepsy to PNES: patients experiences and understanding of their new diagnosis.

The experience of adjusting to a diagnosis of non-epileptic attack disorder (NEAD) and the subsequent process of psychological therapy.

For people with NES, their stigma perceptions are probably not without foundation. In Western nations derogatory views of NES may be linked to the disparaging use of terms such as ‘psychosomatic’ in the media, which might be taken to mean an illness that is feigned, malingered or representative of a character flaw []. Unfortunately, these pejorative opinions are also found in medical circles []. For those with the condition, stigmatising interactions with health professionals are not uncommon []. People with NES often report their symptoms are met with disbelief, not taken seriously, and that the legitimacy of the illness is sometimes questioned by clinicians []; and research exploring health professionals’ views supports these assessments [].

Illness perceptions of neurologists and psychiatrists in relation to epilepsy and nonepileptic attack disorder.

The opinion of the general practitioner toward clinical management of patients with psychogenic nonepileptic seizures.

The impact of conveying the diagnosis when using a biopsychosocial approach: a qualitative study among adolescents and young adults with NES (non-epileptic seizures).

Changing the diagnosis from epilepsy to PNES: patients experiences and understanding of their new diagnosis.

The experience of adjusting to a diagnosis of non-epileptic attack disorder (NEAD) and the subsequent process of psychological therapy.

Contrary to previous HRQoL findings [], we found participants who reported being in employment or education (part-time or full-time) to have significantly better HRQoL than those who were not. This discrepancy might be explained the classification of those in education as ‘employed’ in our analysis. Before applying the Holm–Bonferroni method, we also found receipt of disability benefits to be a differentiating factor. As previously observed [], we did not find relationship status or participants’ age to be discriminating factors. Nor were significant differences observed in relation to participants’ country of residence, gender, or living arrangements and their HRQoL. To our knowledge, these are novel findings and require substantiation.

Seizure frequency was shown to be significantly, but weakly correlated with HRQoL. This finding is in contrast to those of a systematic review which concluded that seizure frequency is not a predictor of HRQoL in this patient group []; but is consistent with a study of 96 patients with NES, which found seizure frequency to be significantly associated with lower HRQoL summary scores (SF-36) [].

Psychogenic nonepileptic seizures and health-related quality of life: the relationship with psychological distress and other physical symptoms.

Participants’ socio-demographic characteristics were not found to determine stigma perceptions. However, significant differences in levels of felt stigma according to relationship and employment status were noted prior to applying the Holm–Bonferroni method; and seizure frequency was shown to be significantly (albeit weakly) correlated with perceived stigma scores. These findings are consistent with studies of epilepsy patient populations [], but require verification in NES patient populations.

The association of stigma with self-management and perceptions of health care among adults with epilepsy.

4.1 Limitations

While our findings offer a novel contribution to the literature, it is important that they are interpreted within the context of their limitations.

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Fountain N.B. Quality of life outcome is associated with cessation rather than reduction of psychogenic nonepileptic seizures. Despite differences in recruitment methods, other socio-demographic and health-related characteristics of our participants are also within the range of those reported in previous studies exploring the HRQoL of people with NES. In terms of age and gender (mean 31–42 years, 69–100% female) []; relationship status (58% married or partnered) []; proportion in education or employment (45–67%) []; time from onset of NES (median 3–4 years) [] (mean 4.7–8.9 years) []; time to diagnosis of NES (median 3.5 years) []; and frequency of NES in the four weeks prior to testing (median 6–15 seizures) [] mean (10.9 to 23.7) []. Data pertaining to physical and psychological comorbidities was not within the scope of our analysis, and our sample might differ from those previously described in these respects.

There might also be important differences between people with NES who have access to the Internet and participate in patient support groups, and those who do not. It is also a weakness of the study that the recruitment method did not allow us to recruit a comparison group, and the study is cross-sectional and correlational, which means that results can be bidirectional and should be interpreted with caution. It is possible that changes in social circumstances or status are more relevant to HRQoL and/or stigma than current circumstances – something best explored longitudinally. The correlational nature of our findings means that we cannot say anything about causalities.