Double Stigma: Reluctance to be referred to a psychiatrist among people with epilepsy and psychiatric comorbidities.

Introduction: Psychiatric comorbidities such as depression and anxiety disorders are highly prevalent among people with epilepsy (PWE). These two co-occurring chronic illnesses could lead to double stigma and negatively impact every aspect of psychiatric and epilepsy care for PWE, especially in help-seeking behavior. We aimed to identify the socio-demographic and clinical factors contributing to reluctance to be referred to a psychiatrist among PWE.

Methods: A prospective cross-sectional study was conducted at a tertiary teaching hospital in Kuala Lumpur, Malaysia. Psychological screening was done using the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and General Anxiety Disorder (GAD-7) questionnaire. Patients screened positive were offered psychiatric referrals and given an early psychiatric clinic appointment if they agreed to the referral. The reasons for those who refused the referral were noted.

Results: Out of 585 patients, 91 (15.5 %) were screened positive for depression and/or anxiety. Eighteen patients were excluded from the study due to pre-existing psychiatric disorders. Of the remaining 73 patients, 23 (31.5 %) agreed to be referred to a psychiatrist. Only 17 (23.3 %) attended the psychiatrist appointment. A total of 11 (15.1 %) and one (1.4 %) patients were subsequently diagnosed with major depressive disorder and generalized anxiety disorder, respectively. Another 50 (68.5 %) patients were not referred to a psychiatrist, predominantly (n = 43, 58.9 %) due to reluctance to be referred to a psychiatrist. The reasons included avoidance of referral likely related to stigma (n = 22, 51.2 %), self-reliance, family and caregivers' disapproval of referral, and logistic difficulty. The mean scores in NDDI-E and GAD-7 in the referred group were higher than the not-referred group but not statistically significant (NDDI-E: 17.8 ± 3.6 vs. 16.5 ± 2.5, p = 0.072; GAD-7: 12.4 ± 5.70 vs. 9.8 ± 5.4, p = 0.061).

Conclusion: A significant number of PWE were reluctant to receive psychiatric referrals predominantly due to self-avoidance or family and caregiver disapproval of referral likely related to stigma. An integrated epilepsy care management model is recommended.