Epilepsy & Behavior 40 (2014) 82–83

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Epilepsy & Behavior

j ourna l homepage: www.e lsev ie r .com/ locate /yebeh

Letter to the Editor

Shedding light on epilepsy-relatedquality-of-life research: First 15 years

of Epilepsy & Behavior

To the Editor

Over the past 25 years, among the very few concepts in medicinethat have gained incredible research attention is health-related qualityof life (QOL). Generally considered, theQOL concept implies the impactsof health status on everyday living of people suffering from health con-ditions [1]. Although still not consensually defined, epilepsy-relatedQOL could be simply considered as the evaluations of the impacts of ep-ileptic seizures and antiepileptic treatment regimens on various aspectsof everyday functioning and well-being of the person with epilepsy.Epilepsy-related QOL research is proliferating rapidly, and the concepthas become the most important patient-reported outcome (PRO) mea-sure in prevention, treatment, and rehabilitation among people livingwith epilepsy worldwide.

I consider two turning points in epilepsy-related QOL research.The QOL concept was formally introduced in epilepsy research in

the late 1980s, although various psychosocial aspects of epilepsy havebeen studied for decades. I think that the first turning point inepilepsy-related QOL research was in 1993 when, under the auspicesof the Epilepsy Foundation of America, an international workshopabout epilepsy andQOL in St. Petersburgwas organized [2]. Internation-ally recognized researchers presented their data, analyzed publisheddata, and defined future research directions on the topic. Epilepsy-related QOL was set as an important epilepsy research priority.

In my view, the second turning point in epilepsy-related QOL re-search appears to be in 2000. For the purpose of this letter, I have per-formed a Scopus search to roughly estimate what number of researchstudies reporting epilepsy-related QOL has been published since thefirst turn in 1994. To simplify things, I only searched for “quality oflife” and “epilepsy” in the title, abstract, and keywords, limited only toepilepsy and neurology journals publishing data from January 1994 toJuly 2014. I located 1545 original articles, reviews, letters, and confer-ence articles reporting on some aspects of QOL. Closer inspection re-vealed that since 2000, 1360 (88%) epilepsy-related QOL documentshave been published. There might be many factors that led to an in-creased number of published data about epilepsy-related QOL as ofthe year 2000, such as more QOL instruments developed or greaterawareness to incorporate QOL data into epilepsy treatments. However,in this year was published the first issue of Epilepsy & Behavior, the jour-nal that literally materialized the importance of epilepsy-related QOLresearch recognized from the first turn. I found that Epilepsy &Behavior has published 441 (32.4%) documents on QOL since 2000,Epilepsia 260 (19.1%), Epilepsy Research 74 (5.4%), Seizure 129 (9.5%),Neurology 56 (4.1%), Journal of Epilepsy and Clinical Neurophysiology 47

http://dx.doi.org/10.1016/j.yebeh.2014.08.0141525-5050/© 2014 Elsevier Inc. All rights reserved.

(3.5%), and other journals 354 (26%). The numbers between thejournals probably vary due to a journal policy to publish more onethen another aspect of epilepsy research or the number of articles pub-lished per year is different for each journal. Nevertheless, with everythird article published in its volumes, Epilepsy & Behavior is the absoluteleader in reporting knowledge about different aspects of epilepsy-related QOL. Fig. 1 shows the numbers of major articles published peryear in Epilepsy & Behavior pertaining to QOL.

Going beyond pure numbers, Epilepsy & Behavior advanced the fieldover the past 15 years, adopting a comprehensive approach in publish-ing data on epilepsy-related QOL. First, Epilepsy & Behavior publishedvarious data about QOL and epilepsy. Without going into a deeper anal-ysis of its publications, the most frequently published data are aboutbasic QOL characteristics of children and adults with epilepsy such aspsychosocial functioning or well-being, factors influencing QOL, mea-suring aspects of QOL and instrument development, antiepilepticdrugs andQOL, andQOL in clinical settings.Moreover, Epilepsy & Behav-ior followed all trends in publishing QOL data recognizing that the con-cept of QOL goes beyond simple psychosocial aspects of living withepilepsy. Over the past decade, QOL evolved into a measure of variousprevention, treatment, and rehabilitation aspects of people living withchronic conditions, whichwas recognized by the journal aswell. Finally,it took a broader international perspective when publishing epilepsy-related QOL data. For example, of the above located studies, original re-search data came from researchers residing in 57 different countries,with research groups from 27 countries publishing more than three ar-ticles. Taking an international perspective allowed capturing variouscultural aspects in epilepsy-related QOL research.

Will the future be even brighterwith Epilepsy& Behavior? Taking thelead in reporting epilepsy-related QOL puts huge responsibility onEpilepsy & Behavior in years to come. I believe that the journal has todevelop further and take more steps that will continue to shed lighton epilepsy-related QOL research. The journal needs to solicit newdata about interventions that directly improve QOL, data about specificepilepsy types, economic aspects of antiepileptic drug treatments linkedto QOL, new assessmentmethods, and so on. Further, the journal shouldpromote good research practicewhen consideringQOL by soliciting andparticipating in the development of regulatory documents for reportingand designing QOL studies such as for assessmentmethods or samplingprocedures. Finally, I see the journal's role in promoting clinical applica-tions of QOL data to improve epilepsy treatments in routine clinicalpractice when working with people with epilepsy.

Closing this letter, I would like to congratulate the entire editorialboard and the editor-in-chief for leading the journal during the past15 years. I am proud to have been publishing within the journal, and Ibelieve that the future of epilepsy-related QOL research is brighterwith publications appearing in Epilepsy & Behavior.

Conflict of interest

Nothing to declare.

0

10

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40

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2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Fig. 1. The numbers of major articles published per year in Epilepsy & Behavior pertaining to QOL.

83Letter to the Editor

References

[1] Acquadro C, Berzon R, Dubois D, Leidy NK, Marquis P, Revicki D, et al. Incorporatingthe patient's perspective into drug development and communication: an ad hoctask force report on the Patient-Reported Outcomes (PRO) Harmonization Groupmeeting at the Food and Drug Administration, February 16, 2001. Value Health2003;5:522–31.

[2] Trimble MR, Dodson ED. Epilepsy and quality of life. New York: Raven Press; 1994.

Dejan StevanovicClinic for Neurology and Psychiatry for Children and Youth,

Belgrade, SerbiaDr. Subotic 6a, 11000 Belgrade, Serbia. Tel.: +381 62 55 19 79 (mob).

E-mail address: dejanstevanovic@eunet.rs.