“Quality of Life for the Young Adult with Neurodisability”

Following a successful invitational workshop to explore issues concerning quality of life in young people with neurodisability, it was proposed that a series of reports be produced by workshop participants, summarizing key ideas and proposing ‘next steps’ in the development of this aspect of the childhood disability field.  In collaboration with Mac Keith Press, publishers of the leading neurodisability journal Developmental Medicine and Child Neurology, a supplement to the journal is being developed under the editorship of Drs. Martin Bax, Allan Colver and Peter Rosenbaum. 

United Cerebral Palsy Research and Educational Foundation, a co-sponsor of the May 2007 workshop, has indicated their support to cover the $10,000 publication costs for the supplement.  Given the timeliness of the topic and the large but relatively unfocused literature on ‘quality of life’ in disability, it is expected that this supplement will be widely read and cited, and will serve as a resource for people interested to understand the issues and advance the filed of research in quality of life.

The proposed content of the Supplement will include:

Preface.
To be prepared by Drs. Martin Bax and Murray Goldstein, outlining the scope and gaols of the workshop.

Introduction to Quality of Life and Participation.
Dr. Allan Colver opened the meeting with this broad conceptual overview of the issues and proposed some novel ways of thinking about quality of life in the ‘ICF’ era.  This paper brings those ideas together.

Quality of Life Instruments for Children, Adolescents and Young Adults: How to Choose the Appropriate Instrument for Disabled Individuals.
Drs. Elizabeth Waters and Elise Davis presented an intriguing approach to assessing the structure, content and purpose of measures of quality of life.  A number of people at the workshop proposed that this paper be further developed, and many are contributing to this multi-authored review.  The review will be a selective but very extensive review of measures, considered along several ‘dimensions’ of the quality of life continuum.

Developing a Lifespan Perspective on the Participation and Health of Young Adults with Disabling Conditions since Childhood.
Dr. Marij Roebroeck presented work on some aspects of the life experiences of adults with ‘childhood’ conditions.  She is bringing these ideas together in her written paper.

Identifying Themes from the Novartis Meeting.
Dr. Peter Rosenbaum attempted, at the close of the workshop, to summarize what themes had emerged from the papers and discussions over the time of the meeting.  This paper will review briefly what we know, and consider how current understanding of quality of life in neurodisability can inform both research directions and direct clinical applications.

The full list of invited participants (though not all were able to attend) included:

Prof Mindy Aisen
United Cerebral Palsy Association
Washington

Professor Matthew Allin
Institute of Psychiatry
Kings College
London

Dr Martin Bax
Department of Medicine and Therapeutics
Chelsea & Westminster Hospital

Prof Derek Bell
Department of Medicine & Therapeutics
Chelsea and Westminster Hospital
London SW10 9NH

Dr Paolo Bonato PhD
Editor in Chief
Harvard Medical School
Spaulding Rehabilitation Hospital
Amd Harvard-MIT Division of Health
Spaulding Hospital
125 Nashua Street
Boston MA 02114  USA

Dr Simona Bar Haim PhD
Ben Gurion University of the Neger
Assaf-Harofeh Medical Centre
Tzrifin, Israel

Prof Carlos Carona
Faculty of Psychology and Education Sciences
Coimbra University

Professor M A Chamberlain
Academic Unit of Musculoskeletal and Rehabilitation Medicine
University of Leeds
36 Clarendon Road
Leeds LS2 9NZ

Professor Giovanni Cioni
Stella Maris Institute
University of Pisa
Pisa Italy

Dr Allan Colver
Sir James Spence Institute
Royal Victoria Infirmary
Newcastle upon Tyne

Dr. Elise Davis,
Melbourne
Australia

Prof. Murray Goldstein
United Cerebral Palsy Association
Washington USA

Dr Jan-Willem Gorter
De Hoogstraat,
Utrecht, The Netherlands

Dr Reidun Jahnsen
Oslo, Norway

Prof. Ruth Kent
Department of Rehabilitation Medicine
Pinderfields General Hospital
Aberford Road
Wakefield WF1 4DG

Dr Ann Klassen
CanChild, McMaster University
Hamilton, ON, Canada

Dr Lucyna (Lucy) Lach
McGill University
Montreal, PQ, Canada

Mr. Michael Livingston,
CanChild, McMaster University
Hamilton, ON, Canada

Dr Richard Morgan
Department of Medicine and Therapeutics
Chelsea and Westminster Hospital

Dr Luc Noreau
Professor Titulaire
Departement de Readeptation
Faculte de Medecine
Universite Laval
525 Boul, Hamel
Quebec BC Canada G1M 2S8

Prof Greg O’Brien
Consultant Neuropsychiatrist
University of Newcastle

Dr Ulrike Ravens-Sieberer
Bielefeld, Germany

Dr Rebecca Renwick
University of Toronto,
Toronto, Canada

Dr Marij Roebroeck PhD
Erasmus MC University Medical Center
PO Box 2040
3000 CA Rotterdam

Dr Gabriel Ronen
McMaster University
Hamilton, ON, Canada

Prof Peter Rosenbaum
CanChild, McMaster University
Hamilton, ON, Canada

Mr Andrew Russell
Chairman,
Association for Spina Bifida and Hydrocephalus
Peterborough UK

Dr Saroj Saigal
McMaster University
Hamilton, ON, Canada

Dr Peter Sullivan
John Radcliffe Hospital
Oxford University
Oxford, UK

Prof Alan Tennant
Academic Dept of Rehabilitation Medicine
Faculty7 of Medicine and Health Sciences
University of Leeds
36 Clarendon Road
Leeds LS2 9NZ

Dr Elizabeth Waters
Melbourne
Australia