Image = QoL and epilepsy graphic

Health Related Quality of Life and Epilepsy Research 

Health-related quality of life Epilepsy links
Other QoL issues Epilepsy surgery links
Conferences on QoL
Journals and books on QoL
Submit a LINK to this page

"Health-related quality of life":

Here is a description of Bioethics in Scandinavia, 1991-93 (in English)

The Medical Outcomes Trust is "designed to keep clinicians, researchers, and managers updated about the health outcomes field and to provide opportunities for networking around similar interests. Membership benefits include a variety of customized services that enhance and sustain a dedication to improving health from the patient's perspective."

Researcher Berit Rokne Hanestad (in English) has some things to say about quality of life.
She is from the University of Bergen. See also:
Image = Norwegian flag Helserelatert livskvalitet (in Norwegian). Health Related Quality of Life,
and a definition of quality of life by Siri Næss (in Norwegian)

McMaster University Medical Centre - about HRQoL measurement in chronic diseases.

Here is a CD-ROM on Quality of Life Assessment in Medicine. New in April 1997

Researchers at a workshop on quality-of-life studies in clinical trials, organised by the National Cancer Institute, have made some comments on progress.

The Dana-Farber Cancer Institute discusses some issues related to the collection of health-related quality of life information through a computer based (Apple Newton) questionnaire.

The University of Plymouth, Department of Psychology, Health & Quality of Life Research Centre would like you to participate in a survey concerning Health Role Beliefs as part of their research into quality of life.


Other QoL issues:

A LOT of ideas about QoL from the organisation "World Transformation".

News from the Quality of Life Research Unit, University of Toronto The purpose of the Unit has been to develop a means for the Ministry to assess the impact upon individuals with developmental disabilities of the shifting of resources from large institutions to community-based living arrangements. Their definition of QoL is: The degree to which a person enjoys the important possibilities of his/her life.

The International Association for Quality of Life Studies publishes an annual on-line newsletter related to QoL. Those editions available so far are:

  • IAQoL newsletter from 1995
  • IAQoL newsletter from 1996
  • Image = Danish flag Publikationer fra Forskningscenter for Livskvalitet (in Danish)
    A list of publications from a Danish Quality of Life Research Centre.


    Selected QoL related conferences - future:

    3rd European congress of epileptology
    This bi-annual conference will be held in Warsaw, Poland, May 24-28,1998.
    One of the main topics will be:
    Quality of life scales in epilepsy: What do they measure? What can they measure ? and What should they measure and how ?
    "In this session the question of what quality of life is and whether it can be measured will be addressed. An overview of different scales and therapeutic outcome measures will be given, followed by a discussion of subjective versus objective outcome measures in epilepsy. These issues will be related to the general question of how to choose therapeutic outcome measures in medicine."

    For more information contact:

    Polish Travel Agency ORBIS Congress Bureau,

    142, Marszalkowska Str.
    00-061 WARSAW, Poland
    Tel: + 4822 826 8446, 826 1332
    Fas: + 4822 826 4252
    E-mail: bzt@puniv.waw.pl
     
     

    The following conference is organised by the European Health Psychology Society (EHPS)

    # 12th annual EHPS conference: Prevention and Intervention
    31 August - 2 September,1998 Vienna.
    Main themes include:
  • Applied health psychology
  • Health promotion
  • Quality of life

  •  
     

    Here are lists of related QoL Conferences and Conferences on Neurologic disorders.


    Infornation on journals and books:

    Quality of Life Research Journal .

    Quality of Life - Penry (1986) .

    Epilepsy and Quality of Life - Trimble and Dodson (1994) .

    Epilepsy in children and adolescents - Aldencamp et al. (1995) .

    A new Web Search Engine devoted entirely to neuroscience from the Center for Intelligent Information Retrieval (a search for 'Quality' and 'Life' produces good results)

    Image = Swedish flag Spris bibliotek. Sveriges ansvarsbibliotek för hälso- och sjukvård (in Swedish).
    Spiris - Swedish health related library link.
    .


    Epilepsy links:

    Frequently Asked Questions about epilepsy

    Epilepsy CHAT (Conversational Hypertext Access Technology) provides a natural-language interface to an information database on epilepsy. Type questions in ordinary English. (Canadian database).

    An epilepsy news group can be found at alt.support.epilepsy.

    Image = Swedish flag Innehållsrik epilepsi startsida från Lund bibliotek.
    Listing of epilepsy links (in Swedish) from Lund City Library.
     

    Image = Norwegian flag Norsk epilepsiforbund.
    Norwegian Epilepsy Association.

    Image = Danish flag Dansk epilepsiforening.
    Danish Epilepsy Association.

    Image = American flag University of Washington.
    Very comprehensive and updated list of epilepsy internet links.


    Epilepsy surgery links:

    US National Institutes of Health (NIH) Consensus Development Conference Statement on surgery for epilepsy - March 19-21, 1990. The original document can be retrived via gopher.

    The Comprehensive Epilepsy Center at The New York Hospital-Cornell Medical Center has a good description of the issues concerning Surgery For Children with Epilepsy



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     This page is maintained by john.chaplin@neuro.ki.se
     

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