Rationale:
There is scarce literature on stigma in families living with psychogenic non-epileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it.
Method:
PNES and ES patients and caregivers completed surveys about demographic, clinical and psychosocial characteristics. Multivariate regression analysis was used to identify correlates of patient and caregiver stigma amongst the collected patient and caregiver characteristics. Results43 PNES and 165 ES patients were recruited. Compared to ES patients, PNES patients had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health and were on fewer antiseizure medications. Stigma was reported by 76.5% of PNES patients and 59.5% of ES patients. Patient stigma level was higher in patients with PNES compared to ES and it was negatively associated with patient quality of life (QOL). Additionally, 28 PNES and 99 ES caregivers were recruited. There were no significant demographic, caregiving or psychosocial differences between the two caregiver cohorts. Stigma was experienced by 72% of PNES caregivers and 47% of ES caregivers. Caregiver stigma level was also higher in PNES caregivers compared to ES and it was negatively associated with patient QOL, and positively associated with patient and caregiver anxiety.
Conclusion:
Compared to ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QOL emerges as a consistent correlate of that stigma.
Funding:
:No funding
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Figure 1