Neurological disorders are high global burden disorders due to their chronic evolution, associated incapacity and high demand on resources. The urgent need to improve efficiency of resources via adequate use of telematic technologies is the focus of the European Neurological Network (ENN) project. ENN is a multimedia telematic network encompassing units located in different countries and giving support to experts and General Practitioners (GPs) in the medical areas of sleep, headache and epilepsy. Support is provided through a set of diverse and coherent end products: tutorials for the education of GPs; signal processing and remote monitoring systems for home monitoring of sleep disturbances. These tools are supported on a European multimedia database/sleep atlas and on communication network facilities including teleconsultation. The synthesis of these end products allowed unification links between data, information, knowledge and users which are expressed in the routine usage of ENN tools.
Predicting attitudes towards teleconsultation systems and intentions of use is crucial at the beginning of the implementation phase, due to the critical role of human factors in its acceptance and continuous utilisation.
The main objective of this study was to assess and understand GP’s attitudes and intentions towards using the teleconsultation system in Neurology, implemented in Lisbon, between Hospital de Santa Maria/Neurology Outpatient Clinic and the Health Care Centers of its Health Unit. The final aim is the promotion of a wide acceptance and utilisation of the system, through the development of adequate communication strategies.
A predictive model “Theory of Reasoned Action” was chosen as method. It was operated with the application of a questionnaire to a sample of 53 GP's, developed from the results of a content analysis of 10 interviews. A total of 44 GP's stated that, probably they will use the system, 5 were neutral and 4 probably will not use it. The responses were submitted to factor and multiple regression analysis. Attitude was determined by only one factor “Accessibility and Quality” (b=0.486; p=0.007) from the 5 factors obtained. The intention variance was explained in 26.9% by the attitude and subjective norm. However, only the attitudinal factor (b=0.469; p=0.002) contributes significantly to its explanation with no significant influence from the subjective norm.
GP's intentions towards using the system are very positive. Nevertheless, there are significant differences between the centers that are participating and not participating in the project. Communication strategies envisaging dissemination and generalised acceptance and utilisation should focus on accessibility and quality of care aspects.
Pierre Escourrou, Sylvain Luriau, Marlène Rehel, Hélène Nédelcoux, Jean-Louis Lanoë
69 - 85
Sleep disorders have a high prevalence in the general population: insomnia (10-20 % of adults), sleep apnoea syndromes (4-6 %). They are responsible for high costs of investigations and treatment modalities. The investigations are usually done in sleep laboratories at the expense of cost in personnel and long waiting lists. Remote monitoring could be an alternative to sleep laboratory studies.
The first aim was to determine the need for sleep remote recording in sleep medicine in Europe, to improve health delivery and to reduce investigation costs.
An enquiry was sent to 500 sleep medicine providers in Europe. Response rate was 11 %. Analysis showed that the main diagnosis is obstructive sleep apnoea in adults. Currently 2/3 of sleep studies are performed in laboratory:
$\cldiamond$ In-lab studies: Average cost for the health care is 390 EURO/study. The range is from 700 in Finland and Germany and 180 in Greece, Belgium and Sweden are around the mean.
$\cldiamond$ Ambulatory studies with EEG: Average cost is around 120 EURO/study i.e. 30 % of inlab cost. The range is from 180 EURO in Portugal to 70 EURO in Germany.
50 % of users are not satisfied with their current practice of ambulatory monitoring although they have a clear need for this technique to increase monitoring capacity (88 %), reduce cost of investigation (85 %), improve sleep quality (60 %), and obtain better acceptance from the patient (76 %).
The expectations from ambulatory monitoring are:
-high diagnostic sensitivity (86 %)
-high reliability of equipment (92 %)
- low interference with patient’s habits (94 %)
It is worth noting that 74 % of users do not expect a fully automated interpretation of data. The indications cited are screening and follow-up of SAS, epilepsy, Periodic Leg Movements and also insomnia and narcolepsy.
As a second aim, a validation study has been set-up for an ambulatory recorder. The reproducibility of the system has been evaluated in 14 patients by 2 consecutive home recordings and was satisfactory in terms of total sleep time and apnoea-hypopnea index. Nevertheless a failure rate of 7 % was observed which should be improved by a better ergonomy of the system.
The third aim was a socio-economical analysis in Paris, in order to define the actual standard mean cost of a polysomnography in the lab (500 EURO) and in ambulatory (238 EURO) i.e. less than one half of the laboratory cost. The monography of the health care process for sleep medicine in Paris showed a delay of more than 10 years for diagnosis of SAS in 25 % of the patients and up to 5 physicians visited before referral to the sleep lab. In 48 % of the cases the primary physician visited is a GP.
In conclusion, there is a clear need for ambulatory monitoring of sleep disorders to decrease the burden of cost and long waiting lists which is not well satisfied with the current health care system and commercially available equipment.
The ENN project was able to develop internet based applications for sleep medicine and prototypes of multimedia tutorials for headache, epilepsy and headache. Telematic technologies were used throughout all workpackages of the European Neurological Network. This overview presents the conceptual links between expert systems, the multimedia database, CD-ROM based tutorials and software tools in order to support neurological diagnostic and therapeutic practice in sleep, headache and epilepsy.
Thomas Penzel, Karl Kesper, Geert Mayer, Jürgen Zulley, Jörg-Hermann Peter
101 - 125
The ENN sleep atlas and database was set up on a dedicated server connected to the internet thus providing all services such as WWW, ftp and telnet access. The database serves as a platform to promote the goals of the European Neurological Network, to exchange patient cases for second opinion between experts and to create a case-oriented multimedia sleep atlas with descriptive text, images and video-clips of all known sleep disorders. The sleep atlas consists of a small public and a large private part for members of the consortium. 20 patient cases were collected and presented with educational information similar to published case reports. Case reports are complemented with images, video-clips and biosignal recordings. A Java based viewer for biosignals provided in EDF format was installed in order to move free within the sleep recordings without the need to download the full recording on the client.
Ana Fred, Joaquim Filipe, Markku Partinen, Teresa Paiva
127 - 147
This paper describes PSG-EXPERT, an expert system in the domain of sleep disorders exploring polysomnographic data. The developed software tool is addressed from two points of view: (1)- as an integrated environment for the development of diagnosis-oriented expert systems; (2)- as an auxiliary diagnosis tool in the particular domain of sleep disorders. Developed over a Windows platform, this software tool extends one of the most popular shells — CLIPS (C Language Integrated Production System) with the following features: backward chaining engine; graph-based explanation facilities; knowledge editor including a fuzzy fact editor and a rules editor, with facts-rules integrity checking; belief revision mechanism; built-in case generator and validation module. It therefore provides graphical support for knowledge acquisition, edition, explanation and validation.
From an application domain point of view, PSG-Expert is an auxiliary diagnosis system for sleep disorders based on polysomnographic data, that aims at assisting the medical expert in his diagnosis task by providing automatic analysis of polysomnographic data, summarising the results of this analysis in terms of a report of major findings and possible diagnosis consistent with the polysomnographic data. Sleep disorders classification follows the International Classification of Sleep Disorders. Major features of the system include: browsing on patients data records; structured navigation on Sleep Disorders descriptions according to ASDA definitions; internet links to related pages; diagnosis consistent with polysomnographic data; graphical user-interface including graph-based explanatory facilities; uncertainty modelling and belief revision; production of reports; connection to remote databases.
Kim Dremstrup Nielsen, Cuno Rasmussen, Michael Bjørn Russell
149 - 160
The purpose with the headache expert system was to develop a diagnostic and educational tool for the general practitioners (GP), in order to improve their management of headache disorders. This chapter describes the diagnostic headache diary, an expert system intended for education and diagnosing headache disorders. The diagnostic headache diary can be printed and used by headache patients at home to record their headache attacks and medicine consumption by a day to day basis. It can also be used by the GP at the clinic in order to provide the headache diagnoses. The diagnostic headache diary was written in the programming language Delphi and implemented as a stand-alone Windows 95 program. It was integrated as one of five modules in the headache tutorial described in another chapter of this book. The diagnostic headache diary consists of four modules: Patient data, diary, medication and diagnosis. Configured around a database, the diagnostic headache diary allows entries of several patients and search facilities. The diagnostic headache diary was tested and validated by entering expert-diagnosed data from different headache disorders which where compared to the computer generated diagnoses.
Teresa Paiva, Christian Guilleminault, Teresa Sagalés, Michel Billiard, Juergen Zulley, Marie Jo Challamel, Jacqueline Louis, Alain Besset, Pierre Philip, Patrik Levy, Agostinho Rosa, Thomas Penzel
193 - 206
A multimedia Sleep tutorial for General Practitioners was implemented from scratch. The implementation had into account the following features: 1) Specific needs of GPs evaluated in 3 different countries, related with Tutorial contents and technical features; 2) Multinational authorship from European experts; 3) Multilingual possibilities; 4) User friendliness and easy navigation. The tutorial was implemented and tested and its gama version is now available for commercialization.
Michael Bjørn Russell, Kim Dremstrup Nielsen, Cuno Rasmussen, Jean Schoenen, Teresa Paiva
207 - 212
The headache multimedia educational tool for the general practitioners, consists of five different modules, i.e. classification, clinical data, headache tutorial, diagnostic headache diary and nomenclature. It is possible to move between the modules both vertically and horizontally. This paper concerns the headache tutorial. It consist of case records that the user can test his diagnostic abilities on. Each case record is subdivided into an interview by the physician, physical and neurological examination, laboratory test, sum of positive diagnostic elements, suggestions of diagnoses and management. A total of 12 case records are provided. The system will be available on a CD-ROM.
Within the European Neurological Network (ENN) project an interactive multimedia tutorial covering the medical field of epilepsy has been created. The first priorities of that project to educate health care professionals, e.g. General Practitioners (GP), throughout the European community as how to best diagnose and treat patients (e.g. reduction of frequent consultations, avoiding of excessive and unnecessary medication and useless laboratory tests) and to inform patients and carers are reached by producing a distributable CD-ROM. Later frequent updates of the content of the installed tutorial will take place by a telematic network contacting the multimedia database of the ENN-project.
Using the toolbook author-system with integrated sound, images, animation and videos the data collected from about 10 experts are arranged as an electronic book, with multiple-linked pages and an object oriented program design, based for instance on customisable navigation buttons, special text arrangement, graphics, and staging areas for content and interaction display.
The multimedia tutorial about epilepsy contains case reports, specific multiple choice questions with scoring, video clips etc. and several possibilities for access such as help-pages available all times, index, search machine for phrases, bookmark settings and roadmaps for graphical orientation.
Detailed text is prepared including physiology and pathophysiology, differential diagnosis, investigations, therapeutics, epilepsy in children, advice for patients and carers, and is supported by a glossary, special definitions and proposals for classification of the different kinds of epilepsy.
The tutorial runs with Windows 3.1, 95 and NT and contains 1300 pages text with 382 Fig.s, 14 videos, 70 sound files, 196 definitions and 8 roadmaps
The epilepsy tutorial has been distributed in March/May 1998 to more than 100 general physicians in Germany, Portugal and France.
The sleep analysis and scoring program WSCORE was developed under the European Neurological Network (ENN) project. The purpose was to implement an analysis and scoring system for ambulatory and standard polysomnography. In addition to visual Rechtschaffen & Kales scoring the program offers a possibility of free form visual scoring. It contains also analysis modules for Periodic Leg Movement Disorder, Hjort parameters, heart rate and EMG amplitude. A FTP client module was built into the program so that it can be used as a telemedicine application.
Pierre Escourrou, Kumar Reddy, Joel Courtois, Catherine Morvan
299 - 310
Sleep laboratory have long waiting lists due to the high prevalence of sleep disorders and the low availability of centers. One possibility for improving patient care is an ambulatory recording at home or in a distributed center. Then the data recorded must be transferred for analysis in the specialized center. Similarly, an application is needed for the transfer of raw data when the recordings are made by á health care provider sending sleep technologists to set-up the equipment in the patient’s home. It is ethically preferable that the analysis be made by a physician from an independent organization from the provider to avoid any conflict of commercial interest with the provider whose main purpose is delivering therapeutic equipment (CPAP, oxygen...)
THE OBJECTIVES WERE TO SET-UP AND TEST THE TRANSFER OF SLEEP DATA FILES BY ISDN LINES BETWEEN A HEALTH CARE PROVIDER AND AN EXPERT SLEEP CENTER.
The application had to take into account a wide geographical dispersion of patients, general practitioners and medical experts. For that reason, it was decided to use existing Internet Web technology to facilitate portability and interoperability, reduce design time and costs and speed up deployment.
The healthcare provider is the collecting site of ambulatory sleep recordings performed at the patient’s home by the sleep technician of the provider. The raw data are sent to the sleep center for expert analysis.
The methods used were: a PC set-up with a Gazel pro 2B PC1 board, a commercially available file transfer software (DT Winstutel from ORSENNA) and an ISDN connection at 128 Kbps
The transfer security needs a set-up to maintain the confidentiality of the personal data transmitted: this is ensured through an identification sequence with several encrypted passwords.
The duration of the transfer between Paris and Clamart has been tested for a 44 Moctets file: it took 66 min instead of a theoretical duration of 50min. This difference was explained by a slower transfer rate (93 Kbps) instead of 128 Kbps.
The cost of the transfer has been estimated at 5.4 Euro. This cost can be reduced by subscribing higher transfer tariffs. It amounts to 4.5% of the total cost of the ambulatory procedure at a value of 0.12 Euro per Moctet.
Robert Dekena, Caterina Rehm-Berbenni, Klaus Seyfried
351 - 380
The objective of the ENN-European Neurologic Network project is to improve knowledge and treatment of sleep disorders, headache and epilepsy.
The means to obtain this objective shall be certain software to be distributed to the appropriate users in the medical field and the collection of relevant cases, in order to set up a neurological database.
It is intended that the distribution of the above mentioned software and access to the database, will be able to finance research projects in the neurological field.
The outcome of the EU funded project have been six prototypes, which need further work in order to establish a system of compatible and linked products. A particular emphasis of this work should be put on making the products as process oriented as possible.
At the time being there are already products available in the market, which would be competing with particular ENN prototypes, but there is no set of compatible and linked products, which would be comparable with the intended set of ENN neurological tools. Such set of tools therefore could be a unique selling proposition.
Intellectual property rights and legal implications have to be taken into consideration for the marketing of the ENN products. It has to be made sure, that no third party can assert violation of its IPRs and that, a protection of the products can be attained by appropriate application for IPRs. In the legal field in particular the prescriptions of data protection legislation have to be observed e.g. by obtaining the written consent of patients, whose cases are reported.
The marketing concept should be set up as a short-term, middle-term, long-term strategy.
The short-term strategy should concentrate on carrying out a market validation study at European level and simultaneously the development from prototype to products. The middle-term strategy should be directed towards the market introduction of the ENN products in Europe. The long-term strategy should comprise marketing of the products in all potential markets worldwide.
It is very important to create an ENN brand, which means a common label, a common layout and a common user interface.
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