Working group on Classification
of Impact of Epilepsy
The subcommission/workgroup (SC) was (orally) informed that it
should try and implement its recommendations presented to the ILAE
executive in 1999. These involved that:
- Any further development on the part of ILAE and IBE
would focus on the ICIDH-2.
The arguments are:
- Greater comprehensiveness of this instrument;
- Improved clarification of the present instrument while maintaining
concordance on the "consequence" of disease by other disciplines
concerned with the same person.
- That a task force be established to accomplish the
- Inform WHO about deficiencies encountered which apply to any
kind of user: e.g., lack of mood specification and the need for
multicategories to describe mood state;
- To adapt the ICIDH-2 for use to classify the consequences both
of the interictal and the ictal state in persons with epilepsy
in close cooperation with WHO;
- To produce a brochure to describe the essence of the system
for users in the field of epilepsy care;
- To produce an adaptation of ICIDH-2 containing the elements
which are generally applicable in the epilepsy field, quantification
of same, and provide directions for its use;
- To develop or propose instruments of assessment which are needed
for the correct classification in so far these are not well circumscribed
or perhaps unavailable.
Such a task force should as well comprise members working in the
underdeveloped world (u) as in the developed world (d).
The following disciplines should be available:
- Medical rehabilitation researcher
- Neuropsychologist/rehabilitation psychologist
- Sociologist involved in rehabilitation
- Vocational rehabilitation trainer
Meinardi was asked to try and implement the proposals and form
a new group according to the suggested composition.
The new group consists of:
- Bob Fraser, who fits the requirements d, 4, 7.
- Marieke Reuvekamp, who fits d, 4.
- Rupprecht Thorbecke, who fits d, 6, 7.
- John Eric Chaplin, who fits 4
- Harry Meinardi, who fits 3
It was decided to start small and complete the group in a later
Two different approaches to classification of impact will be considered:
- one which classifies the observed consequences as seen in a
person with epilepsy;
- the other classifying the expected impact of each of the epilepsy
types which may be needed in rehabilitation planning.
To fulfill the task as outlined would be a major undertaking with
the need for a substantial budget and perhaps the help of an other
organisation (University, WHO) to develop assessment instruments.
As a first assignment the group agreed to see how it would work
out to classify a few patients according to the ICIDH-2 draft making
adjustments as deemed necessary from the point of view of an epileptologist.
Furthermore contact has been made with the Dutch WHO collaborating
Centre for the ICIDH-2 (see attachment). News from the grapevines
that adaptations of the ICIDH had been made to accommodate the needs
of classifying the problems of integrity, activity and participation
of people with epilepsy unfortunately could not be corroborated.
Report On Meeting:
On February 18, 2000 a meeting was organized by the Dutch ICIDH-2
team (N=6). In addition to team members 49 participants were present.
First an inventory was taken of points participants would like to
raise. ILAE brought forward 2 points:
- that there are no qualifiers which determine that an impairment
is of a certain duration and occurs repeatedly;
- neither are there qualifiers to express the threat of an intermittent
impairment hitting the person at an awkward moment. The latter
point was translated as a need for Risk-qualifiers.
Further discussions about concepts were not of immediate relevance
to ILAE. Seven participants presented brief overviews of their involvement
in the testing of the ICIDH-2 beta draft.
Ms. I. Oen of the Dutch Burns (Brandwonden) Foundation in Beverwijk,
presented a very sophisticated software program. It might be advisable
for Gert-Jan de Haan to ask her for a demonstration and explanation.
In Groningen and Nijmegen the nursing disciplines are trying to
apply ICIDH-2. It might be of interest for Marieke Reuvekamp to
contact drs. Fokje Hellema, Bureau Verpleegkundige Zaken, Academisch
Ziekenhuis Groningen tel. 050-361.42.84, e-mail email@example.com
(home St. Walburgstr. 5, 9712 HX tel. 314.46.84). While Wil Renier
might be interested in making contact with professor Ms. CMA Frederiks
in Nijmegen (St. Radboud).
Participants were asked, both to get a feel of the use of ICIDH-2
as well as to assist the field trial study 3 of the Netherlands
Collaborating Centre for the ICIDH-2, by either to try and classify
some model cases (maximal 12) or to classify two cases at the time
as concerns respectively for cases a & b function or structure;
c & d activity or impairment, e & f participation aspects, e & g
external factors and i & j personal factors. For ILAE Marieke Reuvekamp
is asked to see whether she can do so.
It was brought to the attention of participants WHO is developing
WHODAS II. This is the acronym for WHO Disability Assessment Schedule,
a measure of functioning and disability that is conceptually compatible
with WHO's recent revisions to the ICIDH-2. Information about a
Dutch version is obtainable from Ms. dr Daphne van Hoeken, PARNASSIA,
lokatie Albardastraat, Albardastraat 100, 2555 VZ Den Haag; e-mail
firstname.lastname@example.org Information about the ICIDH-2 can both
be found at http://www.RIVM.nl
Annual Report 2000 Table of Contents