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 Lesley Greenway a , Declan Ahern a , Yvonne Leavy a , Margaret Rawnsley b , Susan Duncan a, ⁎ a Edinburgh and South East Scotland Epilepsy Service, Department of Clinical Neurosciences, Western General Hospital, Edinburgh EH4 2XU, Scotland, UK b Epilepsy Action, New Anstey House, Gateway Drive, Yeadon, Leeds LS19 7XY, England, UK abstract article info Article history: Received 29 May 2013 Revised 26 August 2013 Accepted 27 August 2013 Available online 2 November 2013 Keywords: Epilepsy Quality of life Men WHOQOL-Bref 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 compari- son 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 qual- ity 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 oppor- tunity to build the patient's resilience. © 2013 Elsevier Inc. All rights reserved. 1. Introduction The term quality of life (QOL) is ubiquitous in everyday social and medical discourse. Where social scientists debate the relationship between the constructs of subjective well-being (SWB) and quality of life [1,2], clinicians and health economists have taken a pragmatic view, developing validated questionnaires to quantify the impact of ill- ness and interventions in a systematic manner. Health-related quality- of-life (HRQoL) measures are incorporated into drug trials, and quality- adjusted life years (QALY) are required in submissions to the National Institutes for Health and Care Excellence (NICE). In the past 20 years, HRQoL studies in epilepsy have burgeoned. A systematic review of 107 HRQoL in epilepsy studies showed that 66 of the 107 examined used epilepsy-specific patient-reported outcome measures and 32 generic instruments [3]. Validated questionnaires like the QOLIE-89, QOLIE-31, QOLIE-10, and Liverpool battery have the virtue of being epilepsy-specific, but they do not allow comparison with other groups with chronic diseases, neither do they enable com- parison of QOL in people with epilepsy (PWE) with the background population or with PWE in different countries. Most epilepsy-specific HRQoL questionnaires were developed in English-speaking industrial- ized nations [4], raising the issue of how much may be lost in translation when these questionnaires are modified for use in non-Anglophone re- gions. Another potential criticism of epilepsy-specific questionnaires is that they may not give a holistic picture of QOL as defined by the World Health Organization (WHO) as an “individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” [5]. In the mid-1990s, the WHO commissioned the development of an instrument to assess QOL which would have cross-cultural validity and be developed simultaneously in a large variety of languages and cultures (WHOQOL Group, 1998). This led to the development of the WHOQOL-Bref, a 26-item instrument with four clear dimensions [5], which has the advantage in most cases of not needing translation, un- like the SF-36. There are now bands of normative data from field trials and studies in Australia [6], France [7], Brazil [8], Denmark [9], and the UK [10]. Epilepsy & Behavior 29 (2013) 497–503 ⁎ Corresponding author: Edinburgh and East of Scotland Epilepsy Service, Department of Clinical Neurosciences, Western General Hospital, Edinburgh EH4 2 XU. E-mail address: susan.duncan4@nhs.net (S. Duncan). 1525-5050/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.yebeh.2013.08.030 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh