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					      EPILEPSY: THE CARE PROVID E R S




Epilepsy:
the care
providers




                                        49
15   M E D I C A L PROFESSIONALS



               Introduction
     ◆ The   respondents were asked about the number of spe-              for 50% or more of their time in providing epilepsy care.
       cialist medical professionals such as neurologists, neuro-         This figure is used as a marker of their predominant
       paediatricians, psychiatrists and neurosurgeons involved           involvement in epilepsy care.



               Salient findings
     ◆A   total number of 32 668 neurologists, neuropaediatri-            of 11 869 psychiatrists involved predominantly in epi-
       cians, psychiatrists and neurosurgeons are reported to be          lepsy care are reported to be available in 80 countries.The
       involved predominantly in providing epilepsy care in the           median number per 100 000 population is 0.10 (inter-
       responding countries.                                              quartile range 0.03–0.28).
     ◆ Neurologists   are involved predominantly in providing            ◆ The median number of psychiatrists involved predomi-
       epilepsy care in 85% of the responding countries. A total          nantly in epilepsy care per 100 000 population is 0.08 in
       of 14 094 neurologists involved predominantly in epilepsy          Africa, while it is 0.20 in the Eastern Mediterranean.
       care are reported to be available in 108 countries. In
                                                                         ◆ More  psychiatrists are involved predominantly in epilepsy
       these countries, the median number per 100 000 popula-
                                                                          care in low-income countries compared with high-income
       tion is 0.18 (interquartile range 0.05–0.46)
                                                                          countries (median number per 100 000 population: 0.09
     ◆ The  median number of neurologists per 100 000 popula-             and 0.03, respectively).
       tion involved predominantly in epilepsy care varies widely
                                                                         ◆ Neurosurgeons   are involved predominantly in providing
       across regions: 0.01 in South-East Asia, 0.06 in Africa and
                                                                          epilepsy care in 68.8% of the responding countries. A
       the Eastern Mediterranean, 0.08 in the Western Pacific,
                                                                          total of 1422 neurosurgeons involved predominantly in
       0.30 in the Americas, and 0.33 in Europe.
                                                                          epilepsy care are reported to be available in 75 countries.
     ◆ Neuropaediatricians   are involved predominantly in pro-           The median number per 100 000 population is 0.04
       viding epilepsy care in 77% of the responding countries.           (interquartile range 0.01–0.09).
       A total of 5 283 neuropaediatricians involved predomi-
                                                                         ◆ The percentage of medical professionals involved in
       nantly in epilepsy care are reported to be available in 87
       countries. The median number per 100 000 population is             epilepsy care varies across income groups of countries.
       0.08 (interquartile range 0.03–0.23).                              For example, 100% of total number of neurologists are
                                                                          involved predominantly in providing epilepsy care in
     ◆ The median number of neuropaediatricians involved pre-             low-income countries compared with 7% in high-income
       dominantly in epilepsy care per 100 000 population varies          countries (The data for the total number of neurologists
       from zero in South-East Asia to 0.14 in Europe.
                                                                          refers to the Atlas of country resources for neurological
     ◆ Psychiatrists are involved predominantly in providing epi-         disorders (5)).
       lepsy care in 69.6% of the responding countries. A total



               Limitations
     ◆ Itis difficult to quantify the number of medical profes-           ◆ The number of medical professionals is greater in higher
       sionals involved predominantly in epilepsy care. The fig-           middle-income countries than in high-income countries.
       ures are based on best estimates by the respondents.               This could be attributable to different definitions of the
                                                                          specialists, or there could be reporting errors.
     ◆ Information  about the distribution of the medical profes-
       sionals in countries is not available but, as reported by         ◆ Thenumber of psychiatrists involved in epilepsy care is
       some respondents, the majority are likely to be concen-            lower in high-income countries compared with low-income
       trated in urban areas, thus leading to more inequity than          countries. One possible reason for this could be the pres-
       is apparent from the above figures.                                 ence or absence of neurology specialists in these countries.



               Conclusions
     ◆ Specialist medical professionals are important members of         ◆ Theinequity in the number of specialist medical profes-
       the team providing comprehensive care for people with              sionals observed across countries in different income
       epilepsy, especially at tertiary level. They are also essential    groups and geographical areas needs to be specifically
       for training and providing support and supervision to pri-         dealt with.
       mary health-care providers in epilepsy care.


50
                                                                                                                                                                MEDICAL PROFESSION A L S                                                                  15



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                                              Hi                                                       * For “N“, refer to 15.1-15.4                                             1563                    575



                                                                                                                                                                                                                                                          51
16   P R O F E S S I ONALS ALLIED TO MEDICINE



               Introduction
     ◆ The  respondents were asked about the number of pro-                more of their time in providing epilepsy care. This figure
       fessionals allied to medicine such as neurological nurses,          is used as a marker of their predominant involvement in
       psychologists and social workers involved for 50% or                epilepsy care.



               Salient findings
     ◆A  total number of 19 732 neurological nurses, psycholo-           ◆ Psychologists are involved predominantly in provid-
       gists and social workers are reported to be involved pre-           ing epilepsy care in 63.2% of the responding countries
       dominantly in providing epilepsy care in the responding             (N=106). A total of 10 342 psychologists involved pre-
       countries.                                                          dominantly in epilepsy care are reported to be available in
                                                                           67 countries, in which the median number per 100 000
     ◆ Neurological  nurses are involved predominantly in provid-
                                                                           population is 0.05 (interquartile range 0.02–0.12).
       ing epilepsy care in 56.5% of the responding countries
       (N=92). A total of 2036 neurological nurses involved pre-         ◆ Social  workers are involved predominantly in provid-
       dominantly in epilepsy care are reported to be available            ing epilepsy care in 62% of the responding countries
       in 52 countries. In these countries, the median number              (N=100). A total of 7354 social workers involved pre-
       per 100 000 population is 0.11 (interquartile range 0.06–           dominantly in epilepsy care are reported to be available
       0.36).                                                              in 62 countries. The median number per 100 000 popula-
                                                                           tion is 0.07. This number varies widely across regions: it
     ◆ While the median number of neurological nurses per
                                                                           is 0.004 in South-East Asia, 0.03 in the Eastern Mediter-
       100 000 population in Europe is 0.19, it is 0.03 in South-
                                                                           ranean, 0.07 in Africa, 0.09 in the Americas and Europe,
       East Asia.
                                                                           and 0.27 in the Western Pacific.
     ◆ The  median number of neurological nurses per 100 000
                                                                         ◆ The  percentage of professionals allied to medicine
       population involved predominantly in epilepsy care
                                                                           involved predominantly in epilepsy care is low, e.g. only
       is 0.07 for low-income countries; it is 0.17 and 0.11,
                                                                           5% of the total numbers of psychologists are involved
       respectively, for higher middle-income and high-income
                                                                           predominantly in providing epilepsy care (the data for the
       countries.
                                                                           total number of psychologists refers to the Atlas of men-
                                                                           tal health resources in the world (4)).



               Limitations
     ◆ Some  countries were unable to provide data regarding               countries. This could be attributable to different defini-
       various professionals allied to medicine as they do not             tions of the specialists, or there could be reporting errors.
       have a separate register.
                                                                         ◆ In significant number of countries where no formal train-
     ◆ Information  about the distribution within countries of             ing programme exists for neurological nursing, many
       professionals allied to medicine is not available but, like all     nurses are informally trained in aspects of neurological
       other specialist human resources, the majority are likely to        care. This is not reflected in the data.
       be concentrated in urban areas.
                                                                         ◆ Itis possible that the job description of social workers dif-
     ◆ The  number of professionals allied to medicine is greater          fers among the countries, making comparison of numbers
       in higher middle-income countries than in high-income               difficult.



               Conclusions
     ◆ For many chronic disorders such as epilepsy, nurses can             epilepsy is grossly inadequate. Efforts need to be made to
       be important providers of primary care and liaison serv-            improve the situation.
       ices at community level. Emphasis is needed to give them
                                                                         ◆ Psychologists are important members of the multidiscipli-
       appropriate training and facilities for providing care to
                                                                           nary team providing comprehensive care to people with
       people with epilepsy.
                                                                           epilepsy. They have an important role in the diagnosis,
     ◆ Inspite of the limitations of the data set, it is clear that        treatment, presurgical evaluation and rehabilitation of
       the number of social workers working in the field of                 people with epilepsy.




52
                                                                                                                  PROFESSIONALS ALLIED TO MEDIC I N E                                                          16


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                          ls                                 Americas                                                                                   Europe
                       na
                    sio n                                    7548                                                                                       11 109
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       be o m ons
     um ed t regi
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                                                                                                                                                                                                    Western
                                                                                                                                                                                                     Pacific
                                                                                                                                                                                                       611




                                    WHO 05.81




                                                                                                             Africa
                                                                                                               326

                                                                                                                                     Eastern
                                                                                                                               Mediterranean            South-East Asia
               * For “N“, refer to 16.1-16.3                                                                                             119            18



                                                                                                                                                                                                               53
17   T R A I N I N G IN EPILEPTOLOGY



               Introduction
     ◆ Thistheme refers to specialist training in the diagnosis,
       prevention, care, rehabilitation and research in epilepsy for
       medical graduates and professionals allied to medicine.



               Salient findings
              facilities in epileptology are available in only
     ◆ Training                                                           ◆ While  only 2.1% of the low-income countries have a
       15.8% of the responding countries.                                   training programme in epileptology, 28% and 23.5% of
                                                                            the higher middle-income and high-income countries,
     ◆ No  facility for training in epileptology exists in countries in
                                                                            respectively, offer training in epileptology.
       South-East Asia, whereas such facilities exist in only 2.6%
       of the countries in Africa, 6.7% in the Eastern Mediterra-         ◆ The  median duration of training in epileptology is 12
       nean, 17.4% in the Western Pacific, 20.8% in the Ameri-               months (interquartile range 5–12). A median number of 10
       cas, and 31.8% in Europe.                                            (interquartile range 5–20) students obtain a specialist degree
                                                                            in epileptology every year in the responding countries.



               Limitations
     ◆ Information was not obtained regarding the prerequisite              department of neurology and often in combination with
       qualification required to train in epileptology.                      the chair for electroencephalography and clinical neuro-
                                                                            physiology.
     ◆ As mentioned by some respondents, informal training in
       epileptology is carried out without licensing. The data do         ◆ Data  regarding the structure of training or the training
       not include this information; e.g. in several countries that         curriculum are not available.
       do not provide a formal diploma or degree in epileptology
       academic chairs have been instituted, usually in the



               Conclusions
     ◆ Education   in the field of epileptology plays a key role in        ◆ Educational materials, including standard guidelines for
       reducing the burden of epilepsy and facilitating the reha-           diagnosis and care of people with epilepsy, ought to
       bilitation of people with epilepsy.                                  be produced and distributed in resource-poor countries
                                                                            where training facilities cannot be established because of
     ◆ Specialist training in epileptology is needed on multiple
                                                                            the high costs involved. Opportunities for the training of
       levels to reach all those concerned in epilepsy manage-
                                                                            professionals involved in epilepsy care from low-income
       ment.
                                                                            countries should also be encouraged.
     ◆ There  is a need to establish eligibility criteria for entry to
       training programmes, accreditation of training centres
       and criteria for epileptologists based on local needs. The
       epilepsy organizations are playing a significant role in
       organizing epilepsy education.




54
                                                                                                            TRAINING IN EPILEPTOLO G Y                                         17




                                                                                                                 t
                   f                                                                                          sen t
                yo                                                                                        Pre bsen le
            ilit in                                                                                            A ilab
         ab          y
      ail ng og                                                                                                    va
    Av aini ptol orld                                                                                        no
                                                                                                                ta
       r        e
17.1 t epil the w                                                                                      tio
                                                                                                           n                                                       WHO 05.77
               in 158                                                                                ma
                N=                                                                             Infor




                                                                                                                           n
                                                                                                                         yi f                                28%
                                                                                                                      log ps o
                                                                                                                    to u
                                                                                                                  ep ro
                                                                                                             e pil e g                  18.8%
                                                                                                           in com                                              23.5%
                                                                                                       ing nt in
                                                                                                     in e
                                                                                                  Tra iffer tries
                                    n                                                         17.3 d coun 155
                                 y i rld                                                                     =
                              log e wo
                            to th
                                                                                                             N
                         ep
                    e pil and                                                                                                    2.1%
                in ons
          in ing regi
       Tra HO 8
                  5
   17.2 W =1   N                                                                      15.8%                                  Lo
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                                                                                                                                            le
                                                                                                                                    m idd
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                                                                                                                             w              i    dd
                                                                                                                          Lo             rm               gh
                                                                                                                                   gh
                                                                                                                                        e               Hi
                                  2.6%                                                                                           Hi
                                                                              d
                                              20.8%                     orl
                                                                       W
                                                  0%
                        a
                   ric                                         31.8%
               Af                as
                       ric                                         6.7%
                     me                  ia
                    A                  As                              17.4%
                                  st             e
                         th  -Ea              rop
                   u                        Eu            an
                So                                      ne
                                                      ra            ic
                                                 iter            cif
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                                                                                  t
                                                                           sen
                                                                         Ab




                                                                                                                                                                               55
18   E D U C AT I O N IN EPILEPTOLOGY


               Prof Peter Wolf

     Good training and continuous education of the profes-             The globalization of ILAE’s educational activity is tak-
     sionals involved in epilepsy treatment are the key to any         ing place in various ways. Other regional commissions in
     improvements in the care of people with epilepsy. Epilepsy        cooperation with EUREPA are organizing similar academies
     care needs to be comprehensive, including medical, social         in their regions. The most advanced of these is the Asian
     and psychological aspects, and multiple professions are           and Oceanian Epilepsy Academy (ASEPA), whose activities
     therefore involved. Dependent on the complexity of the            include epilepsy meetings for the primary and secondary
     individual case, care is provided at the primary, secondary       sector in the least developed countries of the region, educa-
     and tertiary levels of health care. ILAE gives professional       tional sessions at the biennial regional epilepsy congresses,
     education the highest priority. Traditionally, epileptological    and an offer of scholarships for training selected individu-
     training is obtained on-site in well-known epilepsy centres,      als in epilepsy centres. An Eastern Mediterranean Epilepsy
     and updates of knowledge are offered in courses and other         Academy is also under development.
     meetings organized by ILAE Chapters, epilepsy centres,
                                                                       Advanced courses and summer schools are offered to
     pharmaceutical companies and others. Since the early
                                                                       groups of postgraduate students for 1–2 weeks with a
     1990s, a master course in epilepsy is offered for a fee by
                                                                       distinguished faculty of international epileptologists. Since
     King’s College, London, United Kingdom, and the French
                                                                       2002, ILAE has been organizing annual summer courses in
     ILAE Chapter has organized a diploma course in epileptol-
                                                                       Venice, Italy, at the International University on San Servolo.
     ogy in cooperation with several universities (diplôme inter-
                                                                       Students from all over the world are selected on the basis of
     universitaire).
                                                                       their qualifications, experience, affiliation and publications,
     Organized, structured educational activity on a larger scale      with grants to candidates from less affluent countries. The
     started in ILAE in 1996, with the establishment of a regional     courses are partially research-oriented (e.g. Bridging basic
     academy in the European Region – the European Epilepsy            with clinical epileptology) and partly theme-centred (e.g.
     Academy (EUREPA) – which has since been given global              Paediatric epileptology). In September 2005, a new summer
     responsibility. The Academy set out by establishing a modu-       school on clinical pharmacology of antiepileptic drugs was
     lar curriculum for the education and certification of epilepsy     organized for the first time, in Eilat, Israel, on behalf of the
     specialists to ensure the availability of a three-level system    ILAE Commission on European Affairs, also with grants to
     of care in all European countries. Many epilepsy centres and      allow the participation of non-Europeans.
     other institutions that provide on-site training in epileptol-
                                                                       More needed to be done, however, to reach out to
     ogy joined the Academy. Existing educational courses and
                                                                       regions where distances are larger than in Europe, travel
     meetings in the various countries were included in the cur-
                                                                       is expensive, and fewer possibilities exist to receive on-
     riculum on the basis of indicators of quality, and with sys-
                                                                       site education in centres or to attend quality courses. In
     tematic evaluations. These courses which receive EUREPA
                                                                       2004, EUREPA therefore started a programme of distance
     acknowledgement were supplemented with new courses in
                                                                       education with a pilot module about genetics in epilepsy.
     previously neglected fields. Educational seminars of EUREPA
                                                                       This e-learning programme uses the Internet with a special
     became a regular part of the international and regional
                                                                       learning platform. The advantages are:
     epilepsy congresses of ILAE and IBE and other major meet-
     ings, including the annual meetings of several national ILAE                    on an equal basis is possible for anyone with
                                                                       ◆ participation

     Chapters.                                                           a computer and Internet access in any part of the world;

     Train-the-trainer courses established a multinational and         ◆a  tutorial system gives every participant individual access
     multilingual group of certified EUREPA trainers who take             to interaction with an expert in the specific field;
     responsibility for these educational activities at the national   ◆ apart   from an initial meeting, no displacements are neces-
     and regional levels. It turned out that the Academy courses         sary;
     were attended by doctors working at the secondary health-
                                                                       ◆ costs are much lower than for meetings or on-site edu-
     care level even more than by aspiring epilepsy specialists, so
     the trainers adjusted the focus of their teaching accordingly       cation; for students who cannot pay even the modest
     to neurologists, paediatricians and psychiatrists.                  course fee, grants are made available.

     In addition, EUREPA’s system of medical education is now          There are also some disadvantages:
     being supplemented by a similar programme for other               ◆ the course has a tight time schedule which may cause
     health professionals involved in epilepsy care – professions        problems for students who have many professional or
     allied to medicine such as neurological nurses, psycholo-           personal commitments;
     gists, social workers and EEG technicians. This extension is
     being developed as a joint endeavour of ILAE and IBE.




56
                                                                           EDUCATION IN EPILEPTOLO G Y                             18




◆a  ratio of 20 students to one tutor seems to be the rea-        remains a region where epileptology is difficult to develop,
  sonable maximum, which means that either many tutors            EUREPA and members of the French ILAE Chapter took an
  are needed or only a few students can participate;              initiative for French-speaking Africa of establishing a fran-
                                                                  cophone section of EUREPA in 2002. Special sessions took
◆ thestudents have different levels of epileptological
                                                                  place during annual meetings of the French League, and a
  knowledge when they enter the course;
                                                                  series of train-the-trainer courses in French for participants
◆ computers with Internet access are often not available in       from North and West Africa was started in autumn 2004.
  some of the countries most in need;                             These activities are already beginning to make a visible dif-
◆a   relatively high standard of fluency is required in the lan-   ference in Africa.
  guage in which the course takes place (at present tuition       At its last strategic planning meeting, ILAE decided to pur-
  is available only in English).                                  sue, intensify and broaden these initiatives, and to make
Because there is a high interest in these distance learning       education the first priority for the coming years. Special
courses, ILAE will need to recruit many tutors in several         attention will be paid to regions that until now have been
languages from its membership. This seems to be pos-              only marginally involved in ILAE’s educational programmes.
sible, however, because the need for education is widely          For some regions, this will require the education of the pri-
understood. Other modules need to be developed so that            mary health-care sector including professions allied to medi-
distance training in as many aspects of epileptology as pos-      cine. Additional language Academy sections are planned,
sible can be provided. For some fields more sophisticated          the next being a Portuguese-speaking section as a joint
technologies will be required, to enable the exchange of          effort of the Portuguese and Brazilian ILAE Chapters and
EEG and imaging data or of videos.                                EUREPA. The modular system of provision of education,
                                                                  comprising the three components of on-site training in cen-
The linguistic aspect of education that becomes evident with      tres, summer schools and advanced courses, and e-learning
respect to e-learning has in fact been recognized by EUREPA       will be further developed and streamlined. It is ILAE’s ambi-
from the outset. On the principle that a high standard edu-       tion to establish an exemplary global educational system,
cation in epilepsy should be available to everybody in his        and in this way take epilepsy care worldwide a large step
or her own language, the certified EUREPA trainers already         further.
cover more than 35 languages. More specifically, as Africa




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