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Comprehensive Care – Why? and What? The doctor’s perspective
From Prof. Dr. Bernd Pohlmann, Halifax, Canada
Berlin (20. September 2008) – Epilepsy (= repeated unprovoked seizures) is a frequent neurological disorder with a world-wide prevalence of 0.5 to 0.8%. Epilepsy affects a human being in all dimensions. At the same time, even in the 21st century societies seem not to be prepared to deal with this disease leading to sudden unexpected “non-functioning” and occasionally frightening appearance. Despite enormous advances both in medical treatment and new techniques such as epilepsy surgery and stimulation procedures, 1/3 of all epilepsy patients remain refractory with all somatic and psychosocial sequel. They suffer frequently from psychiatric comorbidities (anxiety and depression) and significant stigmatisation. Unemployment and mortality rates are 2-3 times higher than in the general population. These facts translate into a significant public health and economic perspective. „Indirect costs“ due to comorbidity, loss of productivity, repeated counselling due to uncertainty, and unemployment account for 70% of all related health care costs. According to the most recent WHO report, epilepsy ranks 3rd within neuropsychiatric diseases (after cerebrovascular diseases and dementia) with regard to the amount of cumulated DALYs („disability-adjusted life years“).
Epilepsy care restricting to antiepileptic drugs and epilepsy surgery is too reductionistic to address this complex disease. Comprehensive epilepsy care (CEC) as a more holistic concept seems to be the appropriate answer to this: It “means to treat an affected individual as an integral human being with all his needs, impairments, wishes and potential within his social and professional environment… it links intervention in the narrower medical sense (AED, surgery) with non-medical intervention e.g. counselling, offering information, psychosocial assistance, rehabilitation…“ (Comprehensive Care for people with epilepsy, Libbey London-Paris 2001)
Comprehensive epilepsy care is not restricted to specific subgroups of epilepsies and therefore is as important for new-onset epilepsy, as for patients who are seizure-free, drug-refractory, or have significant comorbidities. It applies for all age groups.
The primary goals of CEC are to provide individually tailored treatment lines, to create self-awareness and coping strategies within the affected individual and finally to improve short and long-term quality of life. Prevention is the ultimative goal of CEC. Epilepsy centres as organized in the European Association of Epilepsy Centre (EAEC) are constantly striving for the best epilepsy care following the CEC concept. They try to realize this using a wide range of structures (outpatient services, short-term ward, long-term ward, long-term residential units, schools, vocational training centres, etc.) organized in a network. On an operational level they often have key components such as 1) multidisciplinary teams, 2) frequent case conferences, 3) validated instruments and clinical pathways, 4) continuous evaluation and education, and 5) in some bigger centres accompanying research as quality standard.
Typical treatment domains beside standardized drug and surgical therapy are psychiatric treatment, diagnosis of pseudoseizure, coping strategies for emotional disturbances, and neuropsychological problems, non-medical treatment, vocational assessment and rehabilitation, self-educational program, and specific units for people with learning disabilities.
Currently the described epilepsy centres seem to be without any alternatives within the available health care systems. They represent models of holistic medicine which show life-long commitment to individuals and their families. Now, they are challenged to clearly position within a cost-effectiveness driven health care system and come up with an own poignant profile. Sophisticated documentation of all treatment steps and outcome-orientated research seem crucial to this approach. Innovative concepts such as “First seizure clinics” following a strict CEC strategy (from the very beginning) may be promising undertakings in this exciting process of redefining the role of epilepsy centres.
Slide 1: Burden of disease.
Slide 2: Comprehensive Epilepsy Care.
Slide 3: Comprehensive Care.
Source: 8th European Congress on Epiteptology, Satellite Symposium: “Comprehensive Care of Epilepsy in Europe”, Berlin, 20. September 2008 (Medizin und PR Kommunikation).