Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions Concepts, Evidence and Practice

Gabriel M Ronen, MD, MSc (health research methodology), FRCP(C) (paediatric neurology) Professor of Paediatrics, McMaster University, Hamilton, Ontario, Canada
As a paediatric neurologist he has a wide range of experience with children and youth with neurological conditions. He has been an active clinician, researcher, teacher and mentor with a particular interest in children with epilepsy.

Peter L Rosenbaum, MD, CM, FRCP(C) Professor of Paediatrics, CanChild Centre for Childhood Disability Research, IAHS Building Room 408, McMaster University, 1400 Main Street West, Hamilton ON L8S 1C7 Canada
Research Chair in Childhood Disability Research, Mentoring and Dissemination As a Developmental Paediatrician he has had a wide-ranging experience of childhood disability, with a particular interest in cerebral palsy. For the past 40 years he has been an active clinician, researcher, teacher, mentor, author and editor. In 1989 he co-founded CanChild Centre for Childhood Disability Research and in 2000 he was recognized with the Canadian Paediatric Society's highest award, the Ross Award. Honorary degree Doctor of Science from Universite Laval (2005). In 2007 he was awarded the AACPDM's first Mentorship Award. He is the North American Editor for Developmental Medicine and Child Neurology journal from Mac Keith Press.

Chapter 1: Setting the Stage: Introduction and general overview. Gabriel Ronen and Peter Rosenbaum, McMaster University

Section A: Concepts and perspectives of outcomes

(i) Contemporary Concepts in Health, Disability and Life Quality

Chapter 2: Concepts and perspectives on ‘health’ and ‘outcomes’. Gabriel Ronen and Peter Rosenbaum, McMaster University

Chapter 3: ‘Quality of life’ and ‘health-related quality of life’.Rebecca Renwick, University of Toronto

Chapter 4: ‘Health status’ and the usefulness of the ICF framework: clinical and program perspectivesOlaf Kraus de Camargo & Nora Fayed, McMaster University

Chapter 5: The role of ‘participation’ in the lives of children and youth with neurodevelopmental conditions.Dana Anaby McGill University & Mary Law, McMaster University

(ii) Life Issues in Children and Young People with neurodevelopmental conditions.

Chapter 6: A developmental perspective on childhood neurological conditions. Peter Rosenbaum and Gabriel Ronen, McMaster University

Chapter 7: Psychological impact of living with a neurodevelopmental condition. David Dunn & Michelle Thorne Indiana University

Chapter 8: The characteristics of peer relations among children with neurological and developmental conditions. Tracy Vaillancourt,Jennifer Hepditch, Irene Vitoroulis, Amanda Krygsman, Christine Blain-Arcaro, University of Ottawa & Patricia McDougall, St. Thomas More College, University of Saskatchewan

Chapter 9: Romantic relationships and sexual experiences. Diana Wiegerink & Marij Roebroeck Erasmus University Rotterdam

(iii) Contextual Factors in the Lives of Children and Young People with neurodevelopmental conditions.

Chapter 10: Contextual facilitators: Resilience, Coping and Sense of Coherence. Kim Schonert-Reichl University of British Columbia & Veronica Smith University of Alberta

Chapter 11: The family does matter! Lucyna Lach, McGill University

Chapter 12: Stigma: A pervasive contextual barrier. Ann Jacoby, University of Liverpool & Joan Austin Indiana University

Chapter 13: Advancing the rights of children with neurodevelopmental conditions. Sheila Jennings York University, Toronto

Section B: Quality of life outcomes: Methods and measurements

Chapter 14: Measurement concepts, standards and perspectives of patient-reported outcomes. Aileen Davis, University of Toronto

Chapter 15: Practical considerations in choosing Health, Quality of life and health-related quality of life Scales for Children.  Nora Fayed, McMaster University

Chapter 16: Complexity in the lives of children and young people with neurological and developmental conditions: The role of qualitative research. Debra Stewart McMaster University

Chapter 17: Understanding self and proxy ratings. Gabriel Ronen & Davis Streiner, McMaster University

Chapter 18: Ethics of patient reported outcome measures. David Streiner, McMaster University

Section C: Opportunities to improve quality life outcomes 

(i) Education and Disability

Chapter 19: Knowledge translation: Accessing and using the best evidence to improve child and family outcome. Iona Novak University of Notre Dame Sydney, Australia, Dianne Russell McMaster University, and Marjolijn Ketelaar University Medical Center Utrecht and Rehabilitation Center De Hoogstraat Utrecht, the Netherlands

Chapter 20: Interprofessional Education and Collaboration: Key Approaches for Improving Care. Scott Reeves University of California, San Francisco

Chapter 21: A specialized learning environment can enhance the outcomes of children with cognitive impairment. Elizabeth Kerr Hospital for Sick Children Toronto & Miriam Riches OISE-University of Toronto

(ii) Growing into Adulthood with a Childhood Neurodevelopmental Condition.

Chapter 22: Transition to adulthood: enhancing health and quality of life. Jan Willem Gorter McMaster University, and Marij Roebroeck Erasmus University

Chapter 23: Why we need adult specialists for people with childhood onset neurodevelopmental conditions. Bernard Dan, Free University of Brussels 

Chapter 24: Longitudinal approaches to populations with childhood onset neurodevelopmental conditions: Australian experience with Rett syndrome. Jenny Downs &Helen Leonard, University of Western Australia

(iii) Youth, Disability and Society. 

Chapter 25: Policies, Programs and Practices: The tensions about life quality outcomes. Gina Glidden, McGill University; & Rachel Birnbaum University of Western Ontario

Chapter 26: What is the emerging role of parent and community organizations in health promotion? Primarily a UK experience. Chris Morris & Val Shilling, Medical School Exeter UK

Section D: Conclusions and future developments

Chapter 27: The ICF and Life Quality Outcomes. Peter Rosenbaum and Gabriel Ronen, McMaster University

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