Classification Task Force

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:

1. Any further development on the part of ILAE and IBE would focus on the ICIDH-2.
The arguments are:
1. Greater comprehensiveness of this instrument;
2. Improved clarification of the present instrument while maintaining concordance on the "consequence" of disease by other disciplines concerned with the same person.
2. That a task force be established to accomplish the following goals:

1. 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;
2. 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;
3. To produce a brochure to describe the essence of the system for users in the field of epilepsy care;
4. 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;
5. 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:

1. Biostatistician
2. Medical rehabilitation researcher
3. Neurologist
4. Neuropsychologist/rehabilitation psychologist
5. Nurse
6. Sociologist involved in rehabilitation
7. 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 stage.

Two different approaches to classification of impact will be considered:

1. one which classifies the observed consequences as seen in a person with epilepsy;
2. 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:

1. that there are no qualifiers which determine that an impairment is of a certain duration and occurs repeatedly;

 
2. 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.

Presentations:
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 g.hellema@bvz.azg.nl (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).

Collaboration:
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.

Miscellaneous:
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 d.van.hoeken@parnassia.nl Information about the ICIDH-2 can both be found at http://www.RIVM.nl and http://www.who.ch

Annual Report 2000 Table of Contents