Effect of providing sudden unexpected death in epilepsy (SUDEP) information to persons with epilepsy (PWE) and their caregivers-Experience from a tertiary care hospital.
OBJECTIVE
The primary objective of present study was to observe the effect of providing SUDEP (Sudden Unexpected Death in Epilepsy) information on drug adherence in persons with epilepsy (PWE). We also looked at impact of disclosing SUDEP information on patient's quality of life and mood.


MATERIAL AND METHODS
This prospective study had a pretest/post-test design. A total of 231 consecutive PWE (>15 years) were enrolled. Of these 121 PWE received information about SUDEP in addition to standard epilepsy care. One hundred and ten PWE (control group) received routine standard epilepsy care but did not receive SUDEP information. Follow up assessment was done at 6 months. The primary outcome was a change in drug adherence (measured by Modified Morisky Medication Adherence Scale, MMAS) in PWE following disclosure of SUDEP information.


RESULTS
After 6 months, 116 PWE in the SUDEP information group and 106 in control group were available for follow up. A non-significant higher adherence was observed in the SUDEP information group as compared to the control group (Mean MMAS change 0.51 ± 1.66 vs 0.25 ± 1.26, P value = 0.194). No significant change was perceived in patient's anxiety and depression levels or quality of life in either group.


CONCLUSION
The present study suggests that providing information on SUDEP to PWE and their caregivers may increase drug adherence without adverse effect on quality of life or mood. Well-designed studies with high methodological quality are required to determine the precise effect size associated with disclosure of SUDEP information on drug adherence in PWE.
['Radhakrishnan|Divya M|DM|http://orcid.org/0000-0002-0641-7398', 'Ramanujam|Bhargavi|B|', 'Srivastava|Padma|P|', 'Dash|Deepa|D|', 'Tripathi|Manjari|M|']
D000328:Adult D017028:Caregivers D003645:Death, Sudden D030881:Disclosure D004827:Epilepsy D005260:Female D006801:Humans D007194:India D008297:Male D055118:Medication Adherence D010353:Patient Education as Topic D011446:Prospective Studies D011788:Quality of Life D012307:Risk Factors D062606:Tertiary Care Centers
Sudden Unexpected Death in Epilepsy Persons with Epilepsy drug adherence Modified Morisky Medication Adherence Scale Quality of life in epilepsy depression and anxiety