EpilepsiaVolume 44, Issue s6 p. 59-59 Free Access Quality of Life and Comprehensive Care First published: 18 August 2003 https://doi.org/10.1046/j.1528-1157.44.s6.23.xAboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Improvement in the medical course of a disease does not automatically improve quality of life (QOL), since the psychological, social, and occupational consequences of the illness often remain. Epilepsy may result in early retirement, unemployment or employment for which the individual is overqualified, and social limitations due to fear of seizures. Such people need a comprehensive approach to diagnosis, treatment and counselling. Furthermore, a considerable number of people who remain seizure-free and without side effects nevertheless report restrictions in activities of daily life. Other people have refractory seizures, with and without additional disabilities, or neuro-psychological deficits, which impair their daily activities. All these individuals need additional help to overcome the negative consequences of epilepsy. Comprehensive care programmes are a possible way forward. COMPREHENSIVE CARE IN THE UNITED STATES In the United States, a comprehensive epilepsy programme has been described as one “in which a multispeciality team (physicians, psychologists, nurses, social workers, and specialised technical help) is brought together to provide an organised approach to the management of people with complex problems related to epilepsy”1. An example is the Minnesota Comprehensive Epilepsy Program (MINCEP). COMPREHENSIVE CARE IN EUROPE Comprehensive care was introduced in Europe in the 1990s, and although such programmes so far are generally limited to major medical centres, the concept includes assessment, therapy and networking to all other levels. Comprehensive care requires QOL-oriented, planned, individual therapy and the development of regional services. The first step in such a programme is a comprehensive assessment (preferably by a multidisciplinary team) of the person's performance, including his or her abilities as well as disabilities. The goal of planned individual therapy is to improve QOL, including personal beliefs (Fig. 1). Figure 1Open in figure viewerPowerPoint Comprehensive care. Comprehensive care is generally limited to major medical centres 2. Thus, good communication between those centres and local services is crucial. Examples include detailed and specific reports and videos for the person with epilepsy, their relatives, physician-in-charge and sometimes (with the individual's consent) employers and local social workers. Within each region, there should be expert individuals responsible for people with epilepsy in the community with a remit to coordinate medical treatment, counseling, and psychosocial support. Such experts may be social workers who spend some time in major epilepsy centres to learn more about the illness or epileptologists who regularly visit residential homes for people with disabilities to improve medical treatment and to teach staff. Other tasks include visiting employers to educate them about the risks—real and imagined—associated with epilepsy. In the larger regions, efforts are under way to link services in comprehensive networks. Ultimately, comprehensive care must be tailored to the different levels of the health service, including primary care, and should become the accepted standard of care. “HRQOL [health-related quality of life] takes time to evolve and to become fully evident in patient reports”3. The establishment of good comprehensive care programmes therefore calls for a considerable amount of perseverance, research support, and creativity. RECOMMENDATIONS Multidisciplinary teams are needed for the management of epilepsy. Research projects are needed to study the long-term effects of comprehensive care. REFERENCES 1 Gumnit RJ. Comprehensive epilepsy programs: United States. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive textbook. Philadelphia: Lippincott-Raven, 1997:2865–7. Google Scholar 2 Pfäfflin M, Thorbecke R. Organization of healthcare in different countries: Germany. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive textbook Philadelphia: Lippincott-Raven, 1997:2829–33. Google Scholar 3 McLachlan RS, Rose KJ, Derry PA, et al. Health related quality of life and seizure control in temporal lobe epilepsy. Ann Neurol 1997; 41: 482– 9.Wiley Online LibraryPubMedWeb of Science®Google Scholar Volume44, Issues6September 2003Pages 59-59 FiguresReferencesRelatedInformation
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