Quality of life in a cohort of men with epilepsy compared to a healthy population and those with common chronic diseases in the UK using a generic patient-reported outcome measure

- Comparison of HRQoL was made between MWE, a group with other chronic conditions, and a UK control group using WHOQOL-Bref.
- MWE had poorer HRQoL, but their global QOL was as good as that of the UK control group.
- 38% of patients with epilepsy reported that their lives were “very meaningful”, and 41% enjoyed life “very much”.
- Epilepsy-specific PROMs may concentrate too much on the negative aspects of epilepsy.
- We must explore the positive aspects of our patients' lives if we want to help them become “resilient”.

Patient-reported outcome measures (PROMs) are increasingly used in epilepsy. Epilepsy-specific instruments enable clinicians to gain insight into patients' health-related quality of life (HRQoL) but do not allow comparison between conditions and do not reflect subjective well-being (SWB). Using the World Health Organization Quality-of-Life Questionnaire - Brief (WHOQOL-Bref), a short generic PROM, we compared the HRQoL in a cohort of men with epilepsy (MWE) recruited from the epilepsy clinic and via the website of a large UK epilepsy charity, with seven other groups with chronic diseases. Multiple linear regression showed that mood was the most important independent predictor of the WHOQOL-Bref score. The sample, however, rated their global quality of life as highly as the UK control group, and 38% reported life 'very' or 'extremely' meaningful, and 4% enjoyed life 'very much' or 'extremely'. Because of its structure, the WHOQOL-Bref gives clinicians an indication not only of HRQoL but also of SWB, a broader construct. Our study suggests that the narrow focus of epilepsy-specific HRQoL questionnaires may give only a partial picture of a patient's quality of life. In addition, by concentrating on the negative aspects of life with epilepsy, these instruments may distract both the patient and the clinician from what is good about life, denying the patient the benefits of 'positive psychology' and the clinician the opportunity to build the patient's resilience.